“Life is 10% what happens to you, and 90% how you respond to it.”
Every day, I would awaken, think, say, and truly believe how blessed I was, and I’d do it with total love and gratitude!
I was transported to Kaiser Hospital Vallejo by ambulance and gurney on September 16th, 2010. Hopefully it is the first and last time I have to travel by ambulance, but at least I was awake and able to see out the back window and watch the world go by for the hour trip from South San Francisco. I recall enjoying being anywhere other than the hospital and especially crossing the familiar Bay bridges. I loved knowing I was near and going over the beautiful San Francisco Bay, even if I couldn’t see much of it because I was strapped to the gurney! I remember that day also being significant for two reasons: 1) my parents 43rd anniversary was on the 16th, and 2) a dear friend would be having a mastectomy that same day. Mom was with me in California. Dad was still with grandma at her rehabilitation center in Arizona!
When we arrived at Kaiser Hospital in Vallejo, a big building with multiple wings and a pretty remodeled lobby with a player piano (I later learned), the medics wheeled me around the new wings of the hospital trying to find the rehabilitation unit in the new building on the 4th floor until someone directed us to the old rehabilitation center on the 3rd floor. My floor was not new by any stretch of the imagination, but I was told this rehabilitation center was one of the best in the Nation.
Mom and Dave drove up separately and arrived around the same time. They helped unpack familiar things that made the room feel more homey: my clothes, my silly must-haves like chapstick, deodorant, moisturizer, brush, and my hairbands-the only thing that could make me feel somewhat presentable when others came to visit (especially considering no showers for 12 days!) They found a new home in my drawers along with the food items mom brought and other little gifts such as small sized pajamas to wear in bed if they permitted (at the other hospital I wore a hospital gown that barely tied in the back-what’s with those pointless garments anyways??) Mom knew I had lost weight and went shopping to find me smaller stretchy clothes to wear for my rehab days. I was sooo appreciative! I had a pile of my things like my computer and small dvd player and my backpack right next to me within reach on a chair. Everything had to be within reach as I was still so weak I couldn’t get up to get things yet!
The routine was similar to the other hospital-meds were given throughout the day and evening by the nurses, but there were fewer nurses around, and I didn’t require medical monitoring around the clock like I did at the other hospital. I was given the heparin shots for several days, morning and night until when I was up to 36 total shots in my stomach, I had had it and pleaded with the doctor to modify that. The doctor agreed provided I used the automatic pumping leg squeezers while in bed and some support hose that I would have to wear during the times I was out of bed. I would have agreed to get up and dance if it would have stopped the shots, so that seemed reasonable to me.
I recall the first few days being introduced to everyone who would be working with me in rehabilitation as well as a new rheumatologist, a neurologist, a staff psychologist, and maybe a few more “ologists” I forgot about meeting.
What was new and different to me? For one, I got my first shower in 13 days!! I was wheeled in a big chair that sat right under the stream of water. I recall the nurses helping me and feeling so wiped out afterwards! Also, I was issued my very own wheelchair: black with pretty cool features like hand brakes, compact and pretty easy to use. It had removable arms too, which were very helpful for getting into and out of the hospital bed. I was given instructions on how to use it, but most importantly, I had to call a nurse for help and had to wear a yellow FALL RISK bracelet at all times. I wasn’t able to stand without wobbling and had to transfer from the bed to the chair with the assistance of a nurse, to use the bathroom. Everything was monitored-what I ate and how much-and what came out! Talk about feeling dependent and watched!
I still have the wheelchair. It is a 9000 XT. It still has a piece of tape on the left side that says Sniderman. I guess it is a constant memento of sorts from the experience. It sits next to me as I write 🙂
After meeting all the staff and getting issued a chair, I recall hearing about what the weekly schedule would be in terms of physical therapy, occupational therapy and speech therapy. Each of these would take place for at least 30-45 minutes and sometimes I would have 2 sessions of each during the day. All I remember thinking is how on earth am I going to be able to stay awake through the day, and get through all these therapies? I was sleeping most of the day at the hospital in S SF, except for a few minutes of physical therapy a day! Now they wanted me to try a half hour or 45 minutes at a time?
As expected, I didn’t get through the first day of therapy. I did go to each class and do what was asked, but I was exhausted by the time I hit speech therapy and couldn’t even sit through the session where I was supposed to try eating food…
I went back to my room and slept and was a little disappointed but had to remind myself how much energy was involved even to do little things…
I felt like a battery that only had a limited amount of charge left. Everything was about energy conservation over the next weeks. If I had a shower that morning, I needed to rest until class. If I had class, I needed to rest until the next class. If I had visitors, you guessed it…
Here is how a typical day would go. I would be awakened at 5:30 am or 6 am by a night nurse, sometimes blood would be drawn, and I would have my vitals checked and notated, usually blood pressure and temperature. On alternate days, I was given a shower either really early am or sometimes really late evening. Then at around 6:30 am, with a new nurse on shift, I was given meds. Then after about an hour because of waiting once I took meds, breakfast would come, which with my restricted diet was typically eggs, rice porridge, rice milk, applesauce, apple juice. All was mechanical food-or really really soft so I could easily swallow. Mom brought soy yogurt with honey to supplement. She’d also make me a protein shake each day because I needed mucho calories, protein and fat. Then I could rest until first class. Occupational Therapy staff would come to my room and help me with activities of daily living, like how to get those really hard support stockings on, or what to focus on when I was so tired: brushing my teeth or washing my face? And just how was I to get around in a silly chair and not expend all my energy?
Then I would go to physical therapy. Staff showed me how to transfer from the chair to the mat, what stretches to do, and helped pull and push my legs and arms for me sometimes because they didn’t seem to want to on their own! I would get exhausted just from this activity and someone would push me back to the room and I’d rest. Then I’d have another occupational therapy class, this time in the big room where all the mats and other tools and equipment were used for physical therapy. I was given games to play to help with my hand grip and strength, like moving disks on a circular metal arched rod from the left to the right… or given a theraband or putty to use to increase hand and arm strength. I sometimes stopped and looked around… Did I belong here?? With all of these people who had had strokes, some of whom lost speech, lost feeling in their limbs, might be permanently in a chair?? I truly did feel blessed to be where I was.
Then came speech therapy. My focus was mostly on food and the best type of diet to have while having swallowing issues; we actually spent some of the sessions eating so I could try different textures and see how I tolerated them. The other focus was on concentration. I couldn’t concentrate on anything. It had been weeks since I had read anything-emails, a book, magazine, etc. I had no desire to read at all. Maybe it was from the assorted drug cocktail. Maybe it was just the amount of energy that reading expended. When I realized there was internet access, it was the first time I had seen email for weeks. It was so difficult to concentrate for a long period of time. I was given some memory and brain booster games to do on a computer several times.
Then I would go back to the room and rest, eat lunch, which was usually some soup, a vegetable, rice, a fruit and something mom would supplement because the food would leave much to be desired…
Some days I would visit with friends for a short time. They would wheel me outside, and we’d talk in the garden on the same floor as my room, or sometimes we’d go down to the main floor to the special outdoor garden that had a waterfall. My stamina was really low.
My last physical therapy session during the day was the hardest for me-they called it “gait,” and it was where I was supposed to walk with a walker as many steps as I could. I am pretty obedient, and also pretty determined, and I would do as asked. However, I realized that it was too much. I would be so exhausted that I would collapse and then have no energy to eat or do much else for several hours. The staff decided to switch my gait to earlier in the day, and to request a little less of me. As days went on, I was able to stand with assistance and take a few more steps with the walker, but not without exhaustion. 🙂
Dinner was orange green and white-usually that yam or carrot and yam combo, a green pea mush, and chicken that resembled cat food. I was thankful for the soups and other goodies mom and Dave’s parents brought to counter the monotony of orange green and white. A funny story was that after 14 days of eating that chicken cat food, I had had it. Rather than waste it, mom found a few stray cats at the hospital and started leaving it for them-so it actually did become 🙂
Usually, there was a whole clan around for dinner. They would watch me eat orange green and white, and then apologize that they were going out to eat! I just was so appreciative of all the love and support around me. I was and am SO blessed to have family and friends care so much!
Dave’s parents also drove into town for a week. It was wonderful to have them at the hospital supporting, telling stories, cheering me on on my incremental progress! Dave’s sister Helen would also visit and bring movies such as The Triplets of Belville or Auntie Mame, which mom and I watched when I was alert enough to sit through them! Helen also brought fun things to decorate the room like Halloween plastic figures that she put on the mirror and bulletin board as it was nearing October! It was wonderful to have so much family there.
Dave would visit almost every night after working down on the Peninsula; he would drive up and spend a few hours with me and then drive home to SF. I treasured his efforts and those hours.
Mom was amazing. She would be there with me at the hospital day in and day out. When I rested, she’d take walks, check email and be on the computer, check in with dad and grandma, shop for food and drink, and keep buying me little gifts like colored pencils and paints and MORE CLOTHES to wear in bed 🙂 I was (and am) soooo thankful for her company and love.
One special thing I recall was one particular occupational therapy session. It also speaks to the caliber of the rehab staff. I told my staff person I was a singer-songwriter. I mentioned that part of what I wanted to do was to be able to play and sing again. He asked Dave to bring my Martin acoustic guitar to the hospital, which he did, but this staff person also brought his kid’s guitar, maybe 2/3 sized, for me to play as occupational therapy. I remember even that small guitar was hard for me to hold, and I tried singing “What You Got,” which really was my anthem throughout this whole hospital experience. I know I could barely sing and play; I had no support for my vocals because I was so weak, but playing that guitar and singing renewed something in me. It was like, “I’m going to be ok. I will get through this. And this is what I got right now to give…”
Here’s something I haven’t told many people. I thought rehabilitation would happen quickly-like I’d only be there for a weekend and then not only would I be leaving, I’d be WALKING out of there…
Ok. So I’m idealistic. I know that. Part of me couldn’t handle and didn’t want to imagine the road ahead: weeks or months of therapy and rehabilitation. I needed to see only day by day, and in my ideal world, I was simply waiting for all the drugs to “kick in” so I could get out of that hospital bed and walk out of there. I really didn’t realize until over 10 days had past just how long rehabilitation would actually take, and where I would be physically upon leaving.
“Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever.” Isak Dinesen
Here’s another confession: I wasn’t ready to take on others’ suffering. It was enough that I had my own experience to deal with. I figured I was learning so many life lessons going through my own ordeal; the goal of getting stronger, not giving up, not losing hope, keeping my positive attitude, having gratitude and love, feeling blessed… all of this was my journey.
So why did I also have to see others less fortunate, in my eyes? When I first got to rehab, I saw people who could not feed themselves, people who were partially paralyzed, people with speech impediments from strokes, people who lived with pain, people who struggled to find the words, people who couldn’t go to the bathroom without assistance from machines, people who were incontinent…
When I looked at myself, it’s no wonder I felt blessed. I saw my situation as temporary. I would be out of that wheelchair; I could feed myself; I could use the bathroom; I could speak and think and express on my own!
On Saturday it was group day. Group occupational therapy meant playing a game together like Yahtzee! Speech therapy usually involved an activity that involved interaction with everyone, such as reading an animal on a card and trying to describe it to everyone while they asked questions and guessed the animal. Group physical therapy was usually more mat activity and exercises to strengthen core muscles. The first Saturday I went to group occupational therapy, I felt like I didn’t belong there among the stroke victims, the people who could partially talk or move, the people I labeled in my mind “less fortunate.” I learned over time to see them just as people! People with stories, dreams, hopes, smiles… and over the 12 days I was there, with victories too. I watched people progress incrementally, just like me. They didn’t ask to have strokes or accidents or medical problems that changed their lives in an instant. And most of these people were courageous, fighting, spirited, and driven to do the work. I really learned compassion for others less fortunate and learned so much about myself from this experience too.
The other thing I took away? Hospitals are NO place for rest or privacy. It is enough that nurses check in on you to take your vitals, give you meds, etc., but add to that the environment in the room itself. I ended up having another roommate who was very social and loved to talk on the phone, even late at night! I was so pleased that she had so much love around her, so needed in her situation, so I felt for her and wanted to accommodate. Despite earplugs, I really couldn’t get the necessary rest and on top of that I was extremely immune suppressed. My doctors believed that after 12 days, even though the rehabilitation center wanted me to stay at least 10 more days, it would be safer for me to complete rehab at home. I also would likely be able to get the needed rest! I would be given physical and occupational therapy at home multiple times a week.
Mom and Dave attended my classes with me that last day. They were given instructions on how to best be there as care takers, what my home exercise program would be, what equipment I would need to take home and what would be ordered for the house.
The most fun I had while at the hospital was the last night! Dave came up and we were given keys to a private apartment suite down the hall from my room that we used to try out all those activities of daily living. It had a kitchen, living room, bedroom, bathroom. We tried out cooking in the kitchen, sitting at the table in my chair even showering and sleeping on a real (non mechanical hospital) bed! It was actually fun.
Behind the scenes, Dave was busy getting the house ready-including starting to build a ramp that would go over the 4 steps up to the house and moving the bed to accommodate a wheelchair. Mom extended her stay yet again for another few weeks to make sure I could transition to home.
Meanwhile, back in AZ… grandma was progressing beautifully from her knee surgery and rehab and was also given the ok to return home! 🙂