Mar. 12, 1985… Needed to sort through my clothes. So many I can no longer wear.
Mar. 13, 1985… I wrote a letter to Jon. One of the patients who journeyed to Greece called. Max (another patient) died yesterday. I tried to calligraph a card for his mother, but couldn't seem to control the pen well today. Whenever another of the group who went to Greece dies, I wonder when I'll go,too. Almost all of the ones I knew are now dead. Some cure! It had, at the time, seemed rather promising. Some have said they didn't see why we went; if they had a loved one, they'd probably be on the first plane!
Mar. 27, 1985… It was just 65 degrees; I sat outside in shorts and a light top. A balmy spring breeze is filtering through the still-barren branches of the oak trees, and despite a slight chill in the air, the sun obliterates any shiver which might otherwise have broken upon my skin.
Mom persists in weeding, nurturing her plants, not heeding the complaints of her aching back, while Dad rakes and resets the ground- mole trap. . . "What could be more disturbing than a mole-infested lawn?" And I sit… and observe… and listen. Across the hill, a child chants a rhyme unperfected, to the hap-hazard beat of a jump rope. The adjacent hill delivers the sound of a tree-trimming crew ripping the remnants of a tree to shreds. The birds surround me with a joyful chorus, assured that soon spring shall arrive, while a fly attempts to sun itself on my knee and is foiled in its attempt. A new and unfamiliar bird joins in the chorus, while a rake scrapes the lawn in a rhythmic pattern. An incoming plane drones toward the distant airport and is gone seconds later, only a minor disruption to the day's overall serenity.
A can drops and hits the cement; the wind chimes attest to the steady flow of the soft breeze. A child hollers a rhyme. I wish she would shut up. Ah, she has! Or so the moment portends.
April 1, 1985… (April Fool's Day) I "got" Mom by telling her that I flubbed on one of the posters I was making for the Salad Luncheon publicity. I finally finished reading "The Rosary" a candy-sweet idealistic-love romance.
Mom has begun to clean my upstairs; it's so good of her to do it. I get so tired; I guess I have to give in, sometimes.
April 2, 1985… A good day! Wow! I wrote a lot!
April 3, 1985… Mom is doing all the typing for me; I'm so weak,I really don't feel like doing much.
April 7, 1985… I am having a good day! What a change of pace. I'm re-reading Jon's old letters. They bring back memories. Mom and Dad had a good day with the rest of the clan. She brought back a lovely lacey and beribboned egg to be used for a centerpiece. Sharon sent a tiny basket with pink flowers and a miniature rabbit for me. She is always lavishing me with demonstrations of love and affection. Scott and Brad appeared to enjoy the books.
April 11, 1985… Problems again, but not so I couldn't enjoy the day.It was in the 60's. I wrote a poem about spring.
Spring
All that whichI cannot beIs part of itsVitality…The hov'ring bee,The blossom fair…The youthful birdUpon the air…A burning sunThat buries snowIn shallow gravesFrom whence life grows;Embracing both new seedAnd breathAnd shielding eachFrom thought of death.
Lauren IsaacsonApril 11, 1985
April 21, 1985… I've been reading Sherry's old letters when I tire of writing. It's difficult to write about my first cancer experience; reliving it is not easy.
April 22, 1985… I reminisced high school days; I remember a period when I went through a swearing stage. Crazy. It doesn't exactly build one's character, but for the time, it got one's point across. This was only between close friends, of course. I never cared for public vulgarity in any fashion. It's crazy, too, how one word is considered "vulgar" and another, meaning the same thing, is not. Who decides these things, I wonder? The one that really cracked me up was that the proper British had to come up with a past tense of the word "shit."… in their speech, it is "shat."
May 6, 1985… I tried to write outside, but it was impossible. Gnats kept insisting on flying into my eyes. Mosquitoes were buzzing around my legs, although none seemed inclined to feast; perhaps they were still too young to know what to do with a human. When I used to be able to do things outside, it was no problem; indoors bugs don't bite, nothing seems an annoyance. Once inside and in the comfort of air-conditioning, I wrote a poem.
Seasons Of Life
One mirrors many seasons within his very life;The lush bouquet of springtime, hoarding life, vitality.From the verdant, yielding mind sparks, like tree sap,Bubble through one's firm, yet supple limbs.Unleashing youthful hopes and dreams for growth unhindered,Unrestrained by roiling clouds and murky skies.
As the spring to summer fades, so also, does the life mature,Observing as the inky clouds derived of haughty restlessnessRecede into one's memory, to live subdued and quiet lives'Til time denies their former flame.The waxing moon of summer skies illuminates high-flying clouds;The vessels of one's dreams attained, and hopes of liquid silver.
As summer dies, glamour wanes, and silver dreams to gold transform;Shade not the sun from aging hearts, but bask therein and mark the glowWhich glimmers deep on ancient joys and even where dark shadows fall.Despair not in autumnal gold!In holding fast to summer's hue, beauty passes by, unseen,And spoils itself 'fore winter's grasp.
Crushing life with frigid hands, winter heeds no stricken gazeWhich kindles in the youthful eye whose untouched life is yet benignUnto the last, eternal chill; yet fear, alone, cannot impairThe misty sight of spring's new hope;And though one life the snow enshrouds, in other lives,Breath rallies still depicting seasons, fair and strong,And promising life shall go on.
Lauren IsaacsonMay 6, 1985
May 9, 1985… Mom asked if I'd like to give Sharon my bike because hers is so difficult to pedal.. I don't know…I hate to let go of it just yet. Some days I feel normal. Stupid, I know; guess it's part of my way of maintaining hope. Another idiotic drama! Yesterday I asked Mom to get some angel donuts. They were tarring the road, so she brought two twists from Jewel. I nearly began to cry. I felt like such a jerk; I have so few pleasures in food to look forward to; it just hit me!
May 10, 1985… I calligraphed a Mother's Day card, put a $20 bill in it along with a box of pretty soap for the big day.
May 11, 1985… I've read Jane Eyre, The Crucible, the four of Tolkien's, Catch 22, The Stand, All Quiet on the Western Front; most of them show human emotions in the raw.
May 12, 1985… We had a picnic; it was a beautiful today. Les brought me a dozen roses; they're beautiful, too! Jon called, but I couldn't talk long… problems, again.
May 16 1985… I wonder how much time, if any, I gained by having Chemo the first time around. I had no other choice, especially since it was thought to be a cure. I never would have it again. . . even if it did slow the growth. Living without sickness, caused by the treatment, is best.
May 17 1985… I get "down" in the mornings; physically, I'm at my lowest ebb; it affects my emotional stability, too.
It's strange, but nice weather almost always makes me mad because I feel obligated to get out in it. But, I can't write on my book if I'm outside; there are too many distractions, mostly in the form of bugs in my eyes. If I'm inside, I'm letting life pass me by, and yet, I'm not neglecting my writing. It gets to me that I can't actually do much anymore except sit around outside. No walks, bike rides, or walking down in the woods. Oh, well.
I decided to get my camera and did get some shots of a great yellow butterfly in the Beauty bush. Hope it turns out well.
UPS delivered another of my Lillian Vernon orders. I'll have a choice as I give gifts. I calligraphed a poem inside of a blank card for Steve's graduation. Then I took it and the Indian rug I bought him over to Moore's. We had a nice visit.
My legs are like lead stumps. I've tried to cut out salt; why I'm so plump way up to my knees, I don't know.
May 27, 1985… I just noticed the whistle hanging from my towel rack. I put it there a few months ago in case I needed help. I was having diarrhea so badly. I wondered how long I'd last. It's weird, but having my death forecast is strangely comforting. So many things I won't and don't need to worry about. I know and accept I'm going to die. What is hard is that I still enjoy certain things; I don't really want to die.
Everyone is frightened of dependence. Loneliness is not a fear… helplessness is another matter.
June 16, 1985… My legs look like Lincoln Logs. Oh well, I'll create a Father's Day card.
Black? … White.Wrong? … Right.Up? … Down.Smile? … Frown.In? … Out.Whisper? … Shout.Good? … Bad.IRREPLACEABLE? . . . DAD.
June 22, 1985… Mom has been bringing up my meals. It's so warm for me to come downstairs. The folks bought an insulated drapery to close off my living room. The bathroom and my room will remain cool. Mom also brought me three maternity tops. She told me it was very difficult for her to buy them. I don't know whether I'll keep them or not. Vanity is a funny thing. I keep hoping I can look good in something, but it never ends up that way. My clothes are dwindling in number, and some are not too hot. Mom also got me a purple nightie; it's really pretty.
June 25, 1985… I'm glad I didn't have to go out and try on clothes. I'll keep the things Mom brought me. It would be hard to shop… physically and emotionally.
July 9 thru 13… another bout with the "runs." I was so down for a time. I get depressed from reliving the past. Some things are difficult to recall in such detail as I illustrate a part of my life with the feelings I experienced at the time. It's draining; topping it all off is the fact that I don't have much I can do to alter my life now. I get sick of feeling sick, nausea, diarrhea, and weakness; the daily scheme of events some days. I get weak; I cry. Well, I hope its over for a time. At least I'm not down for this entire day!
July 22, 1985… the day started out great. . . good mood. . . even sat outside for a time. After supper my heart started racing, palpitating like a tick. My normal beat is 110-120 which is rather high. We tried the breathing in a sack, holding the breath. Nothing helped. Mom called the doctor and he prescribed valium. The druggist said they would call when it was ready. They never did. Finally Dad just went over; there it was, just sitting on the shelf.
Man, my chest hurt so, I thought I was having a heart attack. The valium didn't help much. That was 3 hours after the episode had begun. Mom slept upstairs on the couch; it was a bad night. . . sweating, aching, and of course, that rapid heart beat! By 9:00 the next morning it finally slowed to my normal fast rate. What relief. That was a 15 hour trauma! I don't see how my heart can withstand it!
July 24, 1985… There isn't much that can be done for me, but it is nice to be so relaxed. I'll take the valium for awhile, especially while I'm so weak. Mom and Dad are a genuine godsend to me. I don't know what I'd do without them in times like this. I look bad; white face, dark eyes, I had best avoid mirrors! I got a catalog of basket kits. I might send for some things. Mom talked with the doctor about the heart episode. He said I should take the valium as soon as an attack begins; if it persists after a 45 minute period I should go to the hospital and be put on a heart monitor to see what is wrong. I hate not being able to take the valium. I liked being "zoned out" for awhile and so completely relaxed. I can understand why people allow themselves to get hooked on a tranquilizer; they afford a great deal of peace and mental relaxation.
Another thing that spurred my agitation was the fact that I enjoyed being pampered by Mom. She'd wake me up, help me get cleaned up for bed, and bring me trays for each meal. It was so comforting, like the feeling of well-being which is so prominent in one's youth, when parents are the primary source of protection and the sustaining power of life.
Well, I got over it. I guess I just didn't feel like facing reality or my life's idea of "normalcy" yet.
July 29, 1985… I had a great surprise… Jon sent 6 long stemmed roses to me saying, "I hope you get better soon." It was so nice and so unexpected, especially since I've been feeling rather isolated lately. I wrote him a thank you letter.
Aug. 1, 1985… I got a letter from Jon; another nice surprise. A letter can be held and read over and over again; a phone call is soon just a memory. I have the "runs" again. Mom brought tea and warm bagels all day. It helps a lot.
Aug. 11, 1985… I've decided to sell the Chevette and my Viscount (bike); it's so stupid… they just sit there and I'm not going to get any better. I'm 39 inches around the middle. The bike was $156 new and it's in good condition. I'm asking $75 for it.
Mom did a raft of typing this past week. I sat on the front steps withMom and Dad in the afternoon. It was 75 degrees and so beautiful.
Aug. 25, 1985… It's strange, but when Mom and Dad are gone all day, like yesterday, I feel half mad when they return. The truth is that I'm not mad, I'm only in need of some conversation. I need to tell someone about my concerns, or at least have someone around. I do want them to go out; they need to get away. I had the runs; I'm rather amazed also, by my ever-growing shape. . . it's hideous! And I have tons of water retention. Oh, well! It wasn't my best day; I wrote all day, anyway.
Sept. 11,1985… The Chevette has been sold. I should get a refund on my insurance, too. The girl came with her boyfriend to pick up "her" car last night. Dad took a personal check for it; I wish he would have said "NO" to it, but they are probably OK. If not, I just sold my car for $100. (Great)
I couldn't sleep for a while, because I was worried about the check. So… I got up and clipped my toe nails! (What therapy.) (And it didn't cost a cent.)
Today it is 70 degrees, sunny, a slight breeze, ah! I also have the check in my account. Dad phoned to see how much of a refund I'd receive on my insurance. . . it's just $50. Not exactly half of what I paid for the 6 months, but they're not giving up anything!
I found the 4th and 5th grade postcards I sent to Mom and Dad from my camp. They will go in my book.
Yesterday Margaret and I went to lunch. At the cash register the guy said, "Looks like it'll be in the winter." I couldn't figure out what he meant for a second, but then I realized that he thought I was pregnant. I said I had a "liver ailment" and that many made the same assumption. It never floors me at the time, but later I have to admit that it bothers me. I start thinking about it; I get mad at myself because there's no way for me to look stylish. I used to try to belt big tops and "blouse" them over pants. Now, it looks ridiculous. I never thought I could get this big; having to wear maternity clothes and such. . . but then, I never thought a lot of things. Swelling legs, going from a 31-I/2 inch span (in my middle) in the fall of '83 to a 39 inch middle now. (Normally I had a 24 inch waist… I thought I was enormous then!) It's funny, but it just keeps on going, and you have to accept it. At least my face is OK and I can enjoy some things. I can see and hear and am reasonably mobile. . .and I've known what it is to feel physically normal. Some people never do.
Sept. 13 through 15… Weather has been gorgeous! I've been able to sit outside. It always inspires me to write poetry. One is about how life never really changes.
Continuity
The tenth morn of DecemberI was severed from my mother's life,Forced into a hostile worldAnd with a cry, drew my breath.Christmas came, then New Year's Eve,Yet nothing really changed.Days passed by, and soon, years too.My eyes focused on the worldWhich offered more than it received.I found love, and later, fear…Then grief, and peace of mind;I witnessed death and mourned for life. . .Yet nothing really changed.The world revolved and buried sorrowIn a mask of time.Now I am weak,The refuge of malignant death,But still the seasons flicker on.Leaves adrift, float to the ground,While acorns burrow in the earth;Remnants of lifeAnd the hope thereofTogether meld as one.When I depart,Life slows not…And nothing will really change.
Lauren IsaacsonSeptember 15, 1985
Meditation On The Wind
In the trees, cool breezes sing,Directing leaves with steady gustsAnd urging forth pure harmonyFrom swaying, fully laden limbs.No sweeter sound could ride the windThan gently rustling woodland brush;I drink the soothing musicPlaying lightly on the wind,And instantly I feel refreshed,For whispering leaves wipe cares awayAnd liberate imprisoned minds.
Lauren IsaacsonSeptember 16, 1985
Sept. 29, 1985… I have been so swollen lately. My middle hurts when I lay too long; getting up helps. I have the runs; couldn't go to Dubuque for Mom's Sept. birthday; couldn't go to Margaret's to celebrate her mother's birthday. I finally spent 2 hours of the afternoon just sleeping. I finished a poem I was writing about Norm. It follows…
Eternal Bond
Captured on a dismal mornWhen winter's cloakConcealed the sun,My brother journeyedFrom the earth,Perhaps to grasp another time,Or rest beneath the heaven's stars.Perfect sorrow filtered deepWithin my mournful soul;With sightless eyesI scanned my mind,Rendering memories whole. . .And images, like broken shards,I struggled to restoreLest any trait be left behindAnd thus, in death, forever die.Crippling grief and grim despairWithdrew its shadow from my heart,For in myself, his life went on;The steadfast and eternal bondWhich formed in lifeFailed not in death.We laughed, we smiled,We understood,And though I now must walk alone,To loneliness I'll not succumb.
Lauren IsaacsonSeptember 29, 1985
Oct. 17, 1985… It's great this time of year, although melancholic. I sat outside most of the day. Then, as I watched this "mite" of a squirrel, he struggled furiously to retain his grasp on a branch. He frantically succeeded in attaining a safer location; he was noticeably upset. It inspired a poem. I wrote one the day before; I'm not overly thrilled about it, but that's life.
Autumnal Essence
Splendor, bold and riotous,Bespeaks the grand autumnal mood.Blackbirds cackle unrestrainedAmong the trembling golden woodWhile agitated squirrels bury nutmeats'Neath the fragrant turf.Fruit trees, heavy-laden, bendTheir branches toward the earth,Spilling wealth from fertile landsInto eager, out-stretched hands.
Lauren IsaacsonOctober 16, 1985
Ascent To Reality
From beneath the autumn leavesI watched a youthful, auburn squirrelLeap cautionless from limb to limb.With no rival but himselfTo test his acrobatic feats,He bethought he'd mastered allAnd, bathing in a pool of pride,Washed apprehension from his mind.The tiny sprite performed his danceFrom tree to wind-tossed tree,Alive with joy and pure delight…He knew no pain, no discontent,And thus immersed, called life a dream.But noonday warmth soon disappearedAnd golden rays slashed through the trees.The sun cast spotlights on the lawnAnd made the trees let go their crown.Darkness stole the crimson glowAnd, as through his domain he flew,The squirrel ran before the night,Thinking he could out-wit time.On agile feet, both swift and sure,He sailed into the shadowed trees,Yet missed his mark in failing light,Betrayed by faulty, youthful pride.Catapulting toward the earth,The wind reached out and caught his prideAnd blew a limb within his graspTo buffer his naivete'.Life was not a blissful dream;He panted in unsteady breaths,Drawing strength from wisdom gainedThrough time and circumstance.Ascending toward the lofty heights,His vision was renewed. . .The world became RealityBoth beautiful and cruel,While he transformed to earthly size,A minute parcel of himselfYet elemental to the whole.
Lauren IsaacsonOctober 17, 1985
Daydreams
Today I reserve for dreaming,For dismissing the hectic world,For unleashing my burdens unto the windWhere, no longer imprisoned,They'll haunt me no more.If only today, how high I shall fly!Soaring amid the fragrant breeze,Adrift with the blackbirdsAnd fluttering leaves,My freedom will beckon meRise higher stillAnd my spirit, unshackled,Will lounge on the cloudsTo create wistful visionsOf heaven above.But daydreams must endWith the red setting sunAnd, like autumn leaves,Succumb to decay.For today, dreams exist, not for 'ever,Sustaining when all else runs foul.Dreams, alone, are the soul food of God. . .The ambrosia of heaven on earth.
Lauren IsaacsonOctober 24, 1985
Oct. 27, 1985… Todd and Debbie came yesterday. We had a wiener roast for lunch; it was quite appropriate as the day was crisp and clear.
Today, after lunch, I asked Mom how long they would be staying; she thought I was complaining and said, "sometimes I wish it was all over for me so I wouldn't have to listen to all of this; everyone thinks only of themselves, yes, everyone is so selfish." When I recovered slightly I said that I hadn't meant it that way, but that I was scared about getting too tired… I didn't want to say that, it sounded selfish, too.
Too often I have experienced hurtful things when there is a visit; while one can forgive and try to start anew with each visit, I find it impossible to forget. When hurtful statements are made, that person is still the same; there is still that part lurking behind the individual and it becomes difficult to know how "genuine" is their countenance.
Mom apologized for her earlier statement; she was tired and rather depressed. She said she "hurt" for so many people, she felt she was falling apart. I had been so afraid of hurting her with my confidences, afraid I wouldn't have anyone to confide in; I felt incredibly alone. I was so happy she came up; I don't think I could have handled such desperate loneliness. It was great to have a hug.
Nov. 5, 1985… I've neglected this journal; Dad made a frame for my pointalism of the Grand Canyon. I have it behind the sofa on the south wall; I really like it. Other events: Mom and Dad replaced Lynn's stone at the cemetery with a large stone for our entire family; Lynn, Norm, Mom, Dad, and me. They had not told me before, but I've been wondering; when they talk with me about death it is so different for it is spoken with love and deep caring.
We made up a memorial service for me from my writings; I have to select the poems I would like and then it will be complete.
Nov. 7, 1985… The "runs" again, but I was able to sit outside by afternoon. I wore the "Tahoe" sweatshirt Jon had sent some time ago plus my corduroy coat. It was about right. I wrote a poem while sitting there.
I wonder if I'll accomplish all that I truly wish to before I die. . . My book is progressing; I keep writing poetry too, so I have a lot done; a little at a time, and one day at a time! I'd love to finish the quilt and also calligraph some of my poems.
Whispering Pines
I heard the pine trees gossipTo the passing northern winds,Disclosing facts quite true, yet low,In hurried gusts and whispered blows."The hardwoods lost their haughty glow. . .Amazing how fast glamour goes!Now they're merely sapless sticksBereft of life, 'twould seem…They look so gnarled, so thin and sickBeside our evergreen!"
Lauren IsaacsonNovember 7, 1985
Nov. 22, 1985… The 17th I began to run a temp; it continued and by Mon. eve was 103 degrees. Mom tried giving me a cool bath. It was a "real thrill" trying to get down in the tub. (I fell in, and barely made it getting out… I have no strength in my arms or legs). Mom has been sleeping upstairs since I got sick. Food "sticks" so that I would welcome losing it. Mom has been serving me gingerale; it helps. I've lost weight. Noodles are the only food that appeals to me; it's at least a start.
I've not worked on my book since Nov. 7th. Many changes have taken place; even with my weight loss I can no longer wear my beloved mink coat; it's 2 and more like 3 inches from even touching right to left! And to think I was once but 24 inches around the waist! Sharon looks good with her disciplined weight loss. What emotional problems there are to be reckoned with in this life!
Dec. 17, 1985… I didn't elaborate on my 24th birthday; I should fill in the days. There were 30 birthday cards in all. I hadn't expected it, since 24 is a rather "blah" age, and also, I keep thinking the cancer situation will become old hat. I guess I was very wrong. Thursday I walked with Mom to Bev's Xmas Coffee; just 4 houses away. I got tired, then so hot; I could hardly walk home. Mom had wanted to take the car, but I would have felt like a fool for such a short trip. She was right; it was very tiring.
Saturday Mom had a special dinner planned so all could see the new addition to the Isaacson clan. It didn't work out so well; the guest of honor left!
Dec. 23, 1985… We enjoyed a lovely dinner at Chet and Margaret's.The nausea almost spoiled my evening, but it finally passed (whew!).There were just the 3 of them, the 3 of us, and Les. It's betterwithout all the weird things that happen when too many are invited!
Dec. 24, 1985… CHRISTMAS EVE DAY. . . I felt good today. Jon came over around 2:00 and stayed until 4:00. We stayed downstairs by the Christmas tree. He wrapped up a 6-pack of orange-flavored mineral water for me. I had ordered a boomerang for him; and so ended our Christmas.
The family Christmas was great, as usual. Les came, too. We hadCornish Hens, potatoes, stuffing, bread and waldorf salad; excellent!
Afterwards, we read the Xmas story and a few other readings; then we had our exchange.
Dec. 25, 1985… Todd and Debra came for today. Our big meal was at noon. Mom fixed a turkey breast with all the trimmings. We had our gift exchange in the afternoon. Todd got a kick out of his "reality mug" and a Far Side daily calendar.
Dec. 27, 1985… I'm getting sick again, temp of 101… arhythmia heart action lasted 12 hours. This was an illness of long duration. I stayed upstairs. . . I had to waken Mom, (she has been sleeping up-stairs). We tried the deep breathing, plus a few other things. I finally took a valium and tried to relax. Mom called the doctor as early as she dared; he called in a prescription for a heart regulator.
Jan. 1, 1986… Mom made Cornish Hens again for just the 3 of us.I enjoyed the dinner so. We watched the Vienna concert at night.
Jan. 11, 1986… I stay upstairs now, coming down only to have Mom wash my hair using the spray on the kitchen sink. The steps are such a drag, and I like being near all the things I need. I'm so glad I have the upstairs apartment.
I decided to get a color T.V.; Dad picked a 13 in. Sylvania with remote control. I love it. Dad installed an aerial today.
I ordered a lambswool mattress cover; it will cushion these bones of mine. I also ordered a book on decorating, 2 pillows, and a seat for my toilet that will raise me up about 5 inches. (I'm aging fast!)
Margaret came over with a lovely bouquet of 5 red roses interlaced with baby's breath. I gave her 2 covered mugs for her birthday. It's fun to order all these gifts for others. Scott wrote me a thank you letter for his Far Side T-shirt. I was so glad to get the mail.
I talked with Mom at night and blew out some more frustration. I get so angry when I think about people who try to restrict me through their high pressure persuasiveness. Just remembering past grievances evokes terrific anger. I feel so vulnerable and have such a lack of control anymore that anyone's pressure is a direct violation of my inner self. I don't have the strength to fight; I get bent out of shape because if I did what they did, it wouldn't be so easily forgiven. Why is it that people feel sorry for those who continually screw up their lives. "It just ain't fittin'!"
Jan. 24, 1986… I ordered a mini wash stand for outside of the bathroom, a neat basket and also Mom and Dad are going to see what is available in chairs and recliners as I'm having trouble getting out of my old green velvet rocker. We have ordered an egg-crate mattress for me; I hope it works.
Jan. 25, 1986… Mom and Dad went out and looked for a recliner; they found a great one at Banworth and Udelhoven for about $400. They brought home a photo and swatch to show me. I decided it would be fine and they went back in the Chevy truck to pick it up. It looks great in my room and is "Oh, so comfortable." It's a wall-away and won't need to be "out" so far in the room.
I wrote to Todd explaining why I have such a distaste for phones, and do not wish to have one in my room, my desire to be alone more, and my hope that he will not be so troubled over these things. Sharon does come, I know, but we have been close now for many years; Todd did not come home but once or twice a year after finding work in other areas. He gets so upset about my illness (its incurable nature); he calls doctors all over the country to inquire concerning various treatments. I hope this will help him to accept my situation.
Jan. 26, 1986… I had another dream about Norm; I recall I sat in his lap and was worried I'd be too heavy. I was so happy to see him.
I went to sleep with the T.V. on; I wakened at 4:00 a.m. and turned it off. I was down today; so tired and weak. This contributes to depression. After crying a bit and talking to Mom I felt better. More and more I need to be free of visitors. Dad came up later and we talked, which was real nice.
Jan. 27, 1986…The egg-crate mattress and the high toilet seat came today.
Feb. 4, 1986… I'm feeling pretty good these past few days. It's a welcome change. My dreams are so horrible, though. I almost wondered if I'd screamed aloud. One was about rodents that were attacking me and biting my fingers.
I sent for an oak T.V. swivel; it works great. I've chosen more of my slides so Dad can take them in for more prints.
Mar. 5, 1986… I've written through my high school years and now I'm in the anorexic stage and Black Hawk College. It's so hard to work. I'm either too tired or so uncomfortable. My mid-section is huge. It hangs below my bikini underwear. When I sit I must be so straight or it's uncomfortable. Sleeping has become more difficult, also. I get up twice or more most nights. . . sometimes to go the bathroom, other times my hips hurt (I'm so thin), or my ears pound until I sit up and swallow. Sometimes I can't breathe and have to get up and position my pillows on an incline so I can breathe easier.
Mom permed my hair again. It gives it body. I can use the curling iron in the morning if it's needed. I feel better about my looks when it's this way.
I haven't written in my journal for so long. Valentines were abundant.
The wall behind the sofa is complete; I've 4 photos ready to hang when Dad gets the 9" x 12" photo of the shack in the Smokies. I have finished putting my other photos in an album; at least they are no longer loose.
Mar 29, 1986… Dad and Mom installed the air conditioner in my room. (It got up to 78 degrees!) They're putting the other one in my living room window. For awhile, I was afraid Dad was against the idea and it sort of choked me up because I began to think I'd be enclosed in one room for the next five months. It wasn't a great thought. Last year I could get outside and roam around. Now, it's being upstairs and that's about all. I felt stupid; I cry about the least thing anymore. I'm so weak, I lose control easily.
I'm going to work on my quilt, so Mom set up the portable Singer onDad's high machine shop stool; I'll sit on the bed when I sew.
I've been taking Lasix 4 times a day; it seems to work better that way. I take the Aldactone in between. It's difficult to walk. When I sit, the water drains into the current position; when I get up, it feels like my skin will rip.
I had problems sleeping until we put pillows under the egg-crate mattress so I was propped up on a steep incline. I couldn't breathe before.
Mar. 31, 1986… A great day, (AMAZlNGLY). I worked on my quilt for a little while.
May 5, 1986… It's been a long while since I last wrote herein.I guess I didn't find the energy and the will to do it before now.Days are often so much the same.
I had a few physical set-backs through the months; one "flu" episode nearly had us digging my grave. I really wondered if that would be it for me and this world. I had to get the elevated (frame-style) commode from Bev Verstraete. They had purchased it for her father.
It was awful. I was so weak; I couldn't get up from the toilet; even with my raised seat. I tried and tried, but Mom had to help before I made it. Even with her help, getting up was nearly impossible. I was so scared. It had been getting progressively more difficult; I guess I saw it coming, but it's still a blow when it finally happens to you. It's so demeaning. I kept wondering what would've happened if I couldn't get up and was alone; but then, of course, I'm not left alone anymore.
I lost a lot of weight; my face is just skeletal now. Every time I geta "bug" I lose more strength and can never fully regain it.The thought of total incapacitation is rather horrifying.It's bad enough now.
I have accidents in my undies, because sometimes I can't walk fast enough to get there, and have no butt to pinch the rectum closed and hold it back. It's never major; just a spot, but I hate it just the same. I wear a pad for security now.
The 4 Lasix and 2 Aldacton daily don't really do the job. By evening I can hardly breathe, so I can no longer recline in my chair. Dad has made a high platform and secured it with screws so I can just turn from my bed and sit down. The porta-potty is across from it. My world is slowly closing in. The water presses both my heart and lungs causing my heart to flutter from the pressure. Sleep has been difficult of late, I have to sit up on the edge of my bed for a time; then I lay down again. It's better by morning.
At least my foot is better; it was hurting like crazy… I must have hurt it due to water retention (?).
Every time I lose more health it's like some big milestone has been crossed. First it was the overheating, then going to the bathroom restricted the daily walks and other outings; then I had to remain upstairs… then the toilet… and on and on. Each time was such a defeat. I cried about having to stay upstairs because I wondered if I was just "throwing in the towel." Then I cried about not being able to get up from the toilet because it scared me so!
May 19, 1986… Last night Mom and Dad brought pizza upstairs. It was nice. Sharon came for a Saturday bus excursion to a shopping area near Chicago. Mom, Sharon and Rosalind all went. Mom brought me a towel for my wash stand and a nifty wall basket with a lid.
Sharon's going to be coming more often; I'm glad. In some respects, she's like a second mother, yet different too. We share ideas and interests and can talk well.
I've been awfully fatigued lately. All day I can barely keep my eyes open, and writing is an incredible chore. I find myself nodding in the middle of thoughts; it's very distressing when I consider the time limit imposed on my effort drawing closer as the days fold away… naturally, my life has a hesitant grasp on time; I do wish to finish my literary endeavor.
Sleep at night is difficult, which does not sound logical after the fact that I fight to stay awake during the day, but so be it. It's not mine to ask "why."…
June 24, 1986… Such indignities. Dependency shouldn't have to be one, yet it is. And the strange thing is that I feel I am losing myself… slowly… as life trickles from my body, but still, with all that has been and will be lost, every so often I catch a glimmer of myself… in a gesture, a smile, and realize that the core is intact despite the withering exterior. Perhaps the core is that undefinable part of oneself that lives beyond earthly existence.
June 27, 1986… I'm beginning to understand the meaning of intolerable. Sometimes, any more, I feel like a person tottering on sanity's limits. As my weakness increases, my capabilities decrease; I now not only have confined myself to my room, but to one small quadrant thereof, in which I am surrounded by my bed, my chair, my T.V. and (of course), my toilet. At least my mind is still free. Perhaps it will remain so as long as I allow myself to cry and feel. Last night was the first time I ever felt scared of life.
June 29, 1986… Tonight is loud with thunder… the deep, sharp rumbling that shakes the house as if to remind the world that it is alive. It is not subtle, but in it's brazen clap, I can find a reason to rejoice; I live in the shadows of a wondrous and beautiful world, yet thunder is one element of nature from which I have not been excluded, for it penetrates walls.
July 9, 1986… It seems that I cry every day now. Overall, my life is a discouraging mess. I'm just too tired to write. . . and scared to try to sleep. Blast.
July 11, 1986… (Fri.) Yesterday Sharon sent me a carnation flower arrangement. . . 2 pink carnations, greens and baby's breath. Real pretty.
It's been getting more and more difficult at home. Last night Mom and Dad had to lift my legs into bed; Mom is sleeping in my queen-size bed right with me so that she can help me get back in after using the toilet. It's tough to sleep, and I'm afraid I won't be able to get out of bed… my arms and legs are virtually useless. They're like sticks. We had some tough conversation.
(Mother's note). . . Laurie wanted me to call Hospice and arrange for someone to come to the home and explain the various programs available. I did so. Laurel Anderson was willing to come on Saturday morning, but I felt this was not within her scheduled working hours and deferred the appointment to Monday morning at 11:00 A.M.
Laurel Anderson came promptly on July 14 and we climbed the stairs to Laurie's hide-a-way. There were many questions; if a contract was signed, could the patient refuse food. . . would the "Concern for the Dying" contract be respected in that no artificial means would be used to keep the patient alive… would medication for pain be of the type that would not sustain life. . . all of these must be answered before Laurie would want to consider signing a contract with Hospice. In the conversation, answers were given, but always with one addition; it would be hoped that the patient could return to her home. HOPE was no longer a part of Laurie's vocabulary. Just a few short weeks ago, it had been there. She had not been wearing earrings for some time, and noticed that one of the openings had begun to close. She had asked for my assistance in piercing it again. Now she wanted an end to her existence. There was not one position in which she could be comfortable; her desire was to find comfort in the hospital bed's maneuverability.
Satisfied that her wishes could be fulfilled, Laurie signed the contract. Her remaining fear was that Laurel Anderson and the hospital staff would think her a wimp!
July 14, 1986… (her last entry)… I made the decision today… I am going into Hospice. No more fun… no more nuthin'
The ambulance service came at two o'clock. Through all of this ordeal it was a comfort to have Sharon, Laurie's older sister, with us. The two young men who brought Laurie downstairs were cheerful and so very careful. The stretcher had been fashioned into a chair position because of the limited space going down the steps. Upon arriving outside, they positioned her so that she could remain seated, but with legs extended. Not having been outside since December, and not being able to walk the distance to a window for many weeks, Laurie was fascinated by the beauty of the warm summer day.
As I rode in the front with the driver he noted an unusual odor and both men were quite concerned. It was decided they not turn on the siren and proceed at a faster pace because Sharon and Dad were following in the family car; they didn't want to cause further trauma! The ambulance made it to the hospital; it was found to be in need of a "mechanical doctor," but it had fulfilled its mission.
The room was done in vivid color, not of the old vintage beige. As Laurie was helped into bed, she caught sight of her reflection in the mirror; she had not visibly known how she looked for some time. It caused both disbelief and pain. Now came the true test. She was manipulated into several positions; none seemed to help. As the nurse left the room, Laurie finally gave vent to tears. During all of this, she had been a true soldier. It was too much! She now felt she had made a big mistake! Could we bring her back home? It was so little to ask, and yet we knew we could not immediately ask to have her returned. The hospital staff was in transition; the next shift was coming in. This alone added to the confusion, but it also brought help. A veteran of Hospice entered; with a multitude of pillows, plus more manipulating, she was able to bring the comfort Laurie had longed for!
Later in the evening, that same veteran came in to talk and to advise Laurie that it would be best to accept liquids rather than no nourishment at all. We asked concerning the Lazy Boy and the porta-pot from home. Both would add to her comfort. Sharon had left for Dubuque before knowing that "bed comfort" had come to her sister, so I called her as soon as I knew she was in her home. It was very difficult to leave the hospital that night, but I had grown so tired over the past weeks; I selfishly did go home.
Les and Dad placed the Lazy Boy in close proximity to Laurie's bed. It was a welcome change. The staff informed me that Laurie had talked most of the night. She had been given a bath in a portable tub; quite a contraption! I had brought several photo albums as well as photo files and a lovely volunteer was seated by Laurie as I left for my 11:00 appointment with the dentist.
After lunch, Laurie remarked that a tray had been brought with eggs and bacon, a roll and fruit, but she had refused it. It had looked so tempting, but she was determined to follow her own plan. The day passed uneventfully. That evening her cousin, Gary, stopped by for a visit. Upon his leaving, she kidded with him. Later, I went to another section of the hospital to fulfill her desire for frozen bar-type fruit juice. Dad and I left around 11:30.
July 16. . . Laurie was seated in the Lazy Boy when we arrived. Her breakfast tray had her requested liquid diet, untouched. I wanted to help her but she felt too nauseous. She wanted to sit on the edge of the bed. We sat together for over twelve minutes; I, with my arm around her back to brace her, she with her head leaning against mine. She asked if I would help with just a sponge bath this time. We had agreed. The nurse entered and wanted to begin preparing for her bath. Laurie just shook her head and said that she felt too sick. She asked to be seated in her chair; the nurse declined that wish. She wanted to have Laurie lie down. We used the draw sheet and Dad and I lifted her as far to the head of the bed as was possible. She asked to be raised to a sitting position. Each time we pushed the controls she indicated she wanted it higher. As she reached the highest level she looked at Dad and me and said, "Hey, you guys, I'm going!" Seconds later she was gone. It was what she wanted! It was finally over!