NARRATIVES
TALK TO A
ADVICE
I am a 35 year-old single, female, born and raised in Alaska. At the time of the aneurysm I had been working as the office manager in a private psychiatric clinic with three physicians and two therapists for over ten years. I have been living with George , who works as a superintendent for a commercial construction company, for eight years (and planning my wedding almost the entire time!). George and I are building our own home in a remote parkland area of Anchorage, where we are often visited by grizzly and black bears, lynx, moose, a whole lot of flower-eating wild bunny rabbits, and an occasional wolf which usually turns out to be a neighbors loose pet. I enjoy collecting depression-era glass, cake-decorating, flower gardening, finding missing people, fishing, and am a self proclaimed Martha Stewart wannabe. The above photo was taken before the aneurysm (I thought you'll should see me with hair) with the nine-month-old daughter, Jordan Ober-Wolff, of a good friend.
2 May 1999
I experienced a subarachnoid hemorrhage on this past Thanksgiving eve. I was working late at the office (where I am the office manager of a private psychiatric clinic), trying to get caught up for the upcoming four-day holiday weekend. I had pulled my truck up to the front entry and left it running (it was below zero that night). I locked the office and on the way to the truck was suddenly struck with a feeling of constriction in my chest, although I was breathing okay, and it felt that there were weights attached to every one of my muscles. I knew it was something very wrong, but felt I would be okay if I could get to the cell phone in my truck.
It seemed like it took an enormous effort to get in the truck and hit redial. Miraculously, the last person I had called was one of the psychiatrists in our clinic, Merijeanne Moore D.O. (MJ), and she was on-call for the holiday weekend, so had her phone turned on. I don't remember what I said to her but she knew something was very wrong and said she would be there shortly and to stay put. Also, very fortunately, she was at her beau's home (Andy), which is probably 20 minutes closer to the office than her own home.
Before they arrived I had removed my belt, shoes and scarf. I believed I was experiencing myocardial infarction, or other heart failure. When they got to the office, Andy put me in the back of MJ's Ford Explorer and they drove me to the nearest hospital, Columbia Alaska Regional's emergency room. The intake staff, with their book of papers to sign (do those contracts really count when you're in such a condition?), kept asking if I had a headache. I kept saying "no," and then MJ would shush me and say "worst headache of her life, she needs a CAT scan."
They finally got me into the CAT scan, the technician of which was wearing Aramis cologne which reminded me of an old boyfriend and was very comforting to me. While I was in the CAT scan Mr. Aramis exclaimed "Oh my God, somebody page Kralick." Because I work for psychiatrists I knew that Dr. Kralick is a neurosurgeon, so I knew I was in deep doo doo. Also, at this point I suddenly experienced the worst headache of my life. It was so bad, that while on the gurney from the CAT scan room back to the emergency room, I grasped at any wrist that passed my bed and requested drugs.
Back in the emergency room, "Angel Andy" took over my cause and requested drugs from hospital personnel in the hallway. I remember MJ explaining they suspected subarachnoid hemorrhage and surgery was probably inevitable, and her giving my complete medical history to the ER doctor (it's amazing how much you know about coworkers after ten years), and then a nurse inserting an IV of albumin and injecting morphine into the IV drip. I vaguely remember asking Angel Andy not to let go of my hand and that is all I remember of the following five days.
Strangely, although in intense pain and knowing I would probably be having brain surgery I do not remember feeling fear and I had a vague feeling that being alive was a choice. I wonder if there is a neurochemical response to such life-threatening ideas that evoke bravery? I woke up in the ICU unit, knowing I had had surgery and being aware that a urethral catheter was inserted and I was menstruating. This was very uncomfortable, so I yanked it out, as well as the IV in each arm and the IV at the angiogram site and got out of bed. Apparently the staff thought I was "escaping" and I don't remember my motive but suspect was just going to see what was going on.
The next day I did try to escape - hey, I had cash and my car keys and had discovered the morphine drip was on rollers and easy to take along. Again, I don't remember my motive, it was probably the morphine. I also remember thinking I had to procreate soon and tying to explain to the nurse that because I was paying for the room it was none of their business what my boyfriend and I did there. Understandably they threatened to restrain me to the bed, thankfully my friends talked them out of this.
I had so many visitors and gifts and cards; I was overwhelmed at the outpouring of love and support. I was discharged after 17 days (it seems like I was there for a weekend or less). I went to stay at my mothers for a week (she had come up to Alaska from Arizona where she is retired because of my illness). I was very glad for this respite in her home. No matter how old you get, when you're really sick you want you're mommy.
I was discharged on Nimotop (a vasoconstrictor) 250mg four times each day, Dilantin (anti-seizure) 100mg four times each day, Valium (a benzodiazaepine sedative) 10mg four times each day, Effexor (an antidepressant) 75mg XR two twice per day, and Ambien (tranquilizer) 10mg one each night (don't know why they thought I needed a sleeping pill after this daily regimen of sedating medication?)
At my first follow-up ten days after discharge, Timothy Cohen, M.D., the neurosurgeon who had performed the frontal lobe craniotomy said I could discontinue all the medications (Yeah!), but could expect headaches and fatigue to continue for some time. He also cleared me to do anything I had previously done. This was the week before Christmas and almost any Christmas carol on the radio sent me to tears and thankfulness that I was alive.
I continue to have a constant vague feeling that I am here on Earth for a purpose I haven't yet discovered and thankfulness that I have been awarded more time to discover the purpose. Also, I still suffer headaches (and I have a shoebox full of pill bottles from Dr. Cohen, none of which touch the headache, all of which cause nausea and vomiting) and worse, a sleepiness and fatigue that has me sleeping 16+ hours per day.
It has been so reassuring to find this web site and discover that these side-effects are very normal. Still it seems every day that I should be able to do more, even just stay awake. But for as alarming as "aneurysm" or "brain surgery" sounds, so many good things have happened because of it:
I was so happy to find this support page and find out I was not alone in so many of my experiences. I would love to hear from any of you.
Update 6 Jul 1999
It has been over six months since my aneurysm and one would think (and actually everyone "expects" and this is yet another problem for me) that having walked away from such a serious illness with almost no sequelae that I would be happy and thankful to be here. But in reality, every time I think it couldn't get worse, something worse happens. My faith in the powers that be was definitely strengthened by the aneurysm, however, although physically healed (miraculously even), the social and psychological fall-out of such a serious illness has taken quite a toll.
I've waited quite a while to send this update, not wanting to be depressing for you all, but someone on this web page (Julie) helped me realize that part of the beauty of this page is sharing our journeys and learning from each other. So it is my duty to pass on my progress, regardless of its dimension. Also the support I've found here has been truly wonderful, and now is a time when I need all the support and cheerleaders I can get.
I was very lucky (oh yeah! there is good news too!) that those awful aneurysm headaches ceased suddenly and abruptly several months ago and I haven't had a single one since. I wish I could tell you why, because I know a lot of you here suffer with them for a long time after the surgery. However, I continue to struggle with sleep/wake cycle problems and excessive sleep. And the 15 pounds I gained while hospitalized (why did I need a sugar and albumin drip) is still stuck on me. The weight does not please George, but mostly maybe because I am so self-conscious, and the sleep/wake cycle has been significant problem in my relationship.
I had always been a night owl and George an early lark, but when I came home from the surgery, George was unable to sleep without me in the bed with him. It is very sweet in a way, he just can't fall asleep knowing I might have an aneurysm and die on the couch and he needs me next to him to feel safe. However, I toss and turn all night long, forgoing sleep all together unless I take a sleeping pill (Ambien), which causes me to be "stoned" and causes complete memory loss following taking the medication. Understandably, this is very upsetting to George. He wants me off all medications and is angry at me when he sees my pills, sees me taking them, sees by the side-effects that I have taken them, or even if he sees me sending the bills to the insurance company. But he is also angry if I don't take them and can't fall asleep, either making him worry or by tossing and turning.
Another significant stressor (and one that to me is notably not mentioned in the other narratives, although I know this must have happened to all of you) is the tax on our financial flow due to the bills to the various doctors, services, and medications. We had planned on marrying 15 May, after the house we're building was finished, so his parents could come from Maine and stay with us after the wedding. However, we had to postpone the long-awaited nuptial due to the aneurysm for many reasons: we haven't finished our home as planned due to the surgery, no money after hospital bills, the veil wouldn't stay on my shaved head, and the biggest reason and the one we don't talk about, is how much this life event has shaken us up.
The first month I was discharged from the hospital my best friend and mother of my godchildren, who I had dedicated myself to in the previous two years, decided that I was a traitor as I chose to remain friends with one of George's coworkers who was dating a woman who had cuckolded my friend with my friend's husband. I told her I thought it was fair and right to forgive Jim, I forgave her husband after all, and Jim's transgression did not seem as severe, how could I not forgive him? And that's what friends are for isn't it? To hang in when their less than bright colors are showing.. forgive and forget trivial grievances....? She did not agree and nastily told me to remove myself from their lives. My Godson, Keegan, was a bright joy in my life, and especially important to me after the surgery when my biological clock began ticking loudly, was missed so much. I cried everyday missing him.
This was another stressor for George and I. Neither of us had ever wanted children, but suddenly I am consumed with the idea that I must procreate, and as I said earlier, it was my first thought upon awakening from the anesthesia. My dreams in the past six months (with all this sleep...!) are rich vivid dreams of babies and families and pregnancy and the circle of life. And synchronistically babies seem to be everywhere. I never noticed them before, but now I can't go to the corner gas station without a baby cooing at me. And at the movies with a four-year-old friend last week, when the mother gorilla reached into the bassinet and pulled baby Tarzan out and he cooed and wiggled deeper into the crook of her arm, I burst out crying - at a Disney matinee!! When I tell George of the latest baby incident he says, "okay, okay, we'll get a puppy."
Significantly, my brother was mauled by a bear while hunting in August of last year. He was miraculously saved - his hunting partner shot the bear as it was munching on my brother, and besides a well-deserved fear of wooded areas, he has very few remaining scars. Our family was already shaken, re-evaluating our commitment to ourselves, each other and our spirituality. (I can't believe I left this out of my first narrative - my poor mom - she won't answer the phone at night any longer, can you blame her?) And then my aneurysm was yet another trauma for my family of origin. Also, my sense that I was spared for a specific reason is intensified as my only sibling was also spared miraculously within a very short period of time. We were very popular at parties over the holiday seasons. You gotta admit "Ya, we're fine. I had brain surgery , he fought with a bear, we both walked it off: How are you doing?" is pretty heady cocktail party banter.
I began working again 4 January, only six weeks after surgery. I felt fine and Dr. Cohen released me to do anything I had done previously, however, in retrospect, I wish someone had said "no, you had a serious illness, you can not work for at least three months no matter how you feel" Likely, it would not have done much good, because I felt like the office needed me and I would've gone anyway.. And certainly, I had never left the office for any significant length of time in a decade and had always been the only employee, when I was abruptly gone, my well-oiled office started squeaking in the weak spots. The doctors decided to run the office themselves versus hiring someone in my absence. When I tell this to people in the field, they look at me in disbelief and moan - it would be akin to my filling in for the doctors in their absence. Not that you had to be a rocket scientist to do my job, but you did have to learn how first.
From the first day I was back the doctors had me under a microscope, suggested that I was disinhibited and pointed out every error I made, blaming these things on the aneurysm. They also realized while I was gone that I had been working 60 to 80 hours per week for years to manage the office and in their concern for me forbade me to work more than 40 hours per week. MJ,. the managing partner of the clinic would call and check to see if was working too many hours. One day she busted me and said "you have to stop this and get a life!" and I said "MJ! You can't make me get a life!" and she said "If you built it, it will come." It was very good advice (hey, she's a board-certified empathic shrink who knows me well).
It was a good plan, part of which being that we would hire someone to come in and help part-time. And amazingly, although I'd asked for this in the past but been rejected as it would increase expense share for each practitioner, they all agreed readily. But when it came to hiring someone MJ drug her feet. She didn't want to deal with training a new person So January, March, February, April, and May passed with no help and the work that I had previously done in a 60-hour week was building up the whole time, not to mention the chaos that remained to be cleaned up after I returned. Also, one of the doctors, Ron, who I had also worked for over a decade, was inexplicably angry at me, very, from the day I returned. He said many times that I was having "brain injury symptoms" and was in denial, the only person not aware of the extent of the my problems. And clearly all three doctors were holding me up to a light and looking for cracks (and guess what? there's more than a few). But Ron's anger was beyond that. He lost control of himself and threw things and cussed at me on a few occasions. Once even in front of other practitioners and patients.
I really can't figure it out. It doesn't make sense...why would he be so angry because I was sick? My family and friends don't think anything is wrong with me and I don't think so either. Anyway, on the fourth of June, a Saturday, I was at the office (but not working,, it was a sunny day, our first, and I was planting flowers in our yard). When the sun went down I went inside to wash up and there was a piece of paper on my chair. It was a one-sentence letter from MJ "You are terminated, effective immediately. Enclosed is your last check." I knew things weren't going well, but I loved these people. I've spent every holiday with them for a decade, not to mention every work day. I took homemade soup to the doctors every time they were sick, bought birthday gifts for their mother's, applauded their successes, gave up my own life to work double time so our practice would be successful, so they could make more money - I loved these people. I was truly shocked.
When I called MJ and asked if it was because of Ron she said it was because of Ron but also all the mistakes I was making and "just everything" and "we saw an attorney and he said we can't give you a reference as we're firing you." I packed my things and went away. It has been just awful. It feels like a divorce...actually I've been divorced and this is worse. But the dynamics are the same.. .what could I have done to prevent it? What did I do so wrong?
If I go to this certain store at exactly two tomorrow I'll get to see MJ!...Oh god, if I drive down this street I might pass by one of the doctors...etc., etc. And my unemployment was denied based on "your former employer reports they had to fire you due to your willful misconduct." The rent check bounced today and there was an eviction notice on my door if not paid in seven days. George could afford to pay for both of us, but he is nearly over the edge anyway...clutching to a hope that "you'll be yourself again soon" Which to him means I'll sleep eight hours and take care of either him or the doctors with all my waking hours. So although feeling fat, sleepy, and insecure I am aggressively seeking employment. I sent out 25 resumes on Monday (which cleaned out my hank account - $1/page to fax and resume paper and stamps). My first interview is tomorrow. They will ask, "why did you leave your last job?" What do I say then? I've been reading books about getting fired trying to come up with some reasonable answer.. .I don't even know what the real answer is....
Here's the good parts: My hair is growing in thicker than it was before (If only I could market this on late-night infoland ("I'll repair your thinning hair problem by personally shaving your head for $100), and the veil stays on now; I believe there is another door opening somewhere for me, this knowledge does not make any of this less painful, but it is a bright hope on the horizon; my mother is still here and almost a friend, she has been so supportive I don't even know how to thank her; and George is still here, a reliable friend who speaks my language, even when he is lacking in humor and easiness, for better or for worse (and I don't want to whine, but I really, really hope this is the worst); and I found a good therapist on the first try (and she gets it -I won't have to waste my money and time playing in sand trays or talking about my mother for ten years); and I'm sure I'm learning something, but frankly I'd rather not know what just yet, at least not till the pain subsides enough that I can see a baby without bursting out crying.
Even when you are graced and recover miraculously from a serious illness like I did, the implications from the trauma continue to impact your social life and that of your families' for a long time. But I know one thing for sure - I was allowed to stay here for some reason and it must be a good one. My friend Marci (mother of Jordan, above) exclaimed with delight "I know why you got fired, so you can be free to have a baby!" It may not be a baby but I'm free and ready for something lovely to happen, and even if it's something that requires a lot of work, I'm healthy and ready.
You all have been just a God sent in my life. If any of you'll have had any of these problems I'd love to hear what did/didn't help. I believe - and I promise - my next update will be a lot more cheerful.
Update: 20 Mar 2004
The University chose me to attend an out-of-state conference in my field - yay me!! It was in Vegas, which was very interesting (as is almost anywhere in America to an Alaskan girl). The best part was a road trip I took after the conference to surprise my Mom where she snowbirds to Phoenix. The last two hours of the trip, I was driving through a lightening storm. We don't get lightening up here. It was so beautiful!! I longed for a front porch and a glass of wine. I wanted to stop in the desert and take pictures, but I don't know what the lightening rules are. Later I passed a Circle K and there were some people outside, so I guess it's okay to be outdoors during lightening, but what about when you are in the desert? And how 'bout when you have metal in your head? LOL ... it's kinda funny, huh? There should be a list that the neurosurgeons can give us. So does anybody know the "lightening rules" and if those of us with clips are more in danger?
Incidentally, this is the 15th plane ride I've taken since the clipping of the aneurysm, and I've continued to have problems when traveling, despite what the medical literature says. My short-term memory, sleep function, physical orientation, and facial recognition all go out the window and the headaches come back in full force. No one can tell me that the air compression of the airplanes doesn't effect the clip somehow. Also, although the clip wasn't enough metal to warrant a special medical card, if something else sets off the security walk-through, the wand is more sensitive and I always end up in the little room with five women with rubber gloves feeling up my head. However, things have improved over time. This trip I was able to walk on one of those moving sidewalks they have in airports without falling down and vomiting ... : o ).
Thanks family, I love you guys, and God bless you.
Update: 27 September 2007
Well, despite what the bevy of doctors said, post-aneurysm clipping (right temporal lobe) I was able to begin university (with a previous education to fifth grade only) and graduate with honors (only summa, but still..), get a job and work full-time, as well as volunteer 60 hours a week for Hope 4 Stroke Network, and 20 to the church, and was on a blind date at the Rio (big casino) imagining the glee my physical therapist would share that I could finally hop! Then boom, I went down...don't know if CVA (cardiovascular Accident) caused stroke and then fell, or if aneurysm imbalance caused fall, which knocked clot free and caused stroke... no matter, I guess. Have hemiplegia (paralyzed on left side), but cognition and speech are okay.
Six months later, I'm walking 500 feet a day in physical therapy with a cane. Living with mom, so back in Alaska.. :o( ... doing better than prognosis, but don't think I''ll get hand back this time, but I can do well with one arm and am hoping and expecting to be living independantly soon. All in all tremendous set-back, but still WAY easier than aneurysm, and you, Family are the only ones with half a shot at relating to that.
Hypertension was well controlled and according to my interpretation of dozens of cardiac, primary care and neurological specialist consults, both aneursym AND stroke were caused by poor vascular health caused by genes and worsened by smoking, diet, and lack of exercise, but I can tell you true - I don't regret a single lobster. Finally got that protein S deficiency test - they say I don't have that gene - I'm not believin' that.
My mailing address is: PO Box 92752, Anchorage, Alaska 99509. A lot of people asked me for it last update.
Discussion, comments, or questions: Patience Rutledge
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