I can't come up with a good title. It could be
Reflections.......but that is to general
Memories.........don't like that either
Unfair........... that's just life
Tired.........Well who isn't
I hate strokes.......not a good title
Actually , any of the above could be the title of this post, and ever since this morning these thoughts have been gripping me and I knew that they needed to be written.
I think I have written before about Jonathan's stroke, at least I did on the caring bridge site that I used to keep. And Feb. is the anniversary month of that life changing, dream shattering event. It was Feb. 1st 2004. Jonathan had just finished his 3rd week of horrible chemo. Nauseous, terrible taste in his mouth, no appetite, no hair, swollen face( which should have been a reason to be concerned) . The oncologist was aware but even he did not understand the warning. Jonathan had also had a morning when he was so weak on his right side that he could not lift his glass to his face with his right hand when he wanted a drink, again the Dr. was alerted but...he had no explanation. The day was Sunday, he had a headache most of the day. At 7 in the evening 2 of my siblings from PA were stopping in with there spouses for a short overnight visit. I prepared a light supper, ham n cheese sandwiches and veggies and dip. They arrived and were barely in the house 5 minutes, and had not even seen him yet when I heard a thud on the bathroom floor. I rushed to check, the door was locked but I got it open with my hairpin and from there, the nightmare began.
He was sweating profusely and he tried to talk but could only stammer, the ambulance came, we went to the hospital. The church had been having services but when they were notified they dismissed after praying. Many came to the hospital and quietly came up beside me and hugged me and assured me of prayers.I was silent, dumbfounded and having contractions. My sister rubbed my back as we waited for the Dr. to figure out what to do next. They didn't know what to do, service was rotten and they were sending us to Roanoke where his oncologist was. In the meantime he started to sweat again and after that he could not make any sound. I was in a complete blissfully ignorant daze and extremely tired and I went to sleep on a waiting room couch while my sister sat by his bed all night. I remember thinking that surely tomorrow they can give him something and he would be ok again. O the bliss of ignorance!
That tomorrow never came! He stayed there for 17 days. Monday they did CT scans and all types of tests. I was alone with him when the Dr. came in to tell me that it was a stroke and even then I was blank. I had no clue what that meant. Sure I knew that old people had strokes but surely this meant something else. He was to young, we still had a life to live, really, it simply did not sink into my head what was happening! On Wed. evening I was going to come home for overnight for the first time but then the Dr. came in to tell us they were going to start Heprin which is a blood thinner and anything could happen. He was at constant risk of having more strokes but starting Heprin was risky because if they gave it to heavy it could make the clot move and instantly kill him. A nurse told me she would not leave if she were me. My children had come up with friends and it was so hard to kneel in front of them and pull them in my arms and tell them that I cannot go home tonight with them. It was Wed. night, prayer meeting in many churches and the word was spread and people prayed.
Because he lived through all that they had to figure out what to do with him. Therapy was next. They moved him to another floor I think that weekend. Speech, physchical and occupational therapy was his routine morning and afternoon. He excelled quickly in everything except speech. The stroke had left the hardest affects on his speech.
Let me back up just a little. I came home Thursday evening, exhausted, weary and worried. I clearly remember getting into bed and curling up and sobbing my eyes out to the One who knew all about it. I had a long chat with God that night. I reminded him that I have 4 sons and another one soon to be born. I told him that all boys need there daddy and I do not understand what He is trying to do or trying to teach me. I did tell him that I am going to hold him at His Word and since He promised to take care of his children that I was going to believe that and trust that He would do it. I went to sleep and slept until morning. I think it was after midnight by then and I had had 4 nights at the hospital so I was very tired.
Family and friends took me the hour to the hospital every day, my vehicle got filled with gas, the children were put to school and babysitters, laundry was done, and everything kept going. I concentrated on him and my unborn baby and chatted with my children when they came to the hospital and in the evening. I rarely went to bed before midnight and the next morning I was on the road again shortly after 8. It was clearly strength from The Father!
Two weeks of intense therapy brought his strength and abilities back quickly but speech was the BIG problem. We came home on Feb. 17th. I was so excited about going home! I was sick of hospital life, I wanted normal family life more then anything else in the world! O the bliss of ignorance! On the way home I got this horrible scared feeling. Now I was his primary care taker, what if anything happens? I got into bed with him that night but I was scared, horribly scared! I listened to his breathing, I rehearsed the what if's, I tried to get my 8 month pregnant body comfortable without disturbing him. The night was terrible.
On March 15th Carlin was born and what a joyful day it was. We had asked a friend to be my coach during the birth since Jonathan did not think he was able to be the support he had always been during the other births. Everything went well and we were able to come home from the hospital the very next day. Family showed up to drive us home because he was still not driving.
And life began in a new way. Speech therapy every day, Dr visits to check his blood 3 times a week and we also did excersizes to develop his brain that took 30 minutes a day. If I was writing a book there would be many more details but since I am not I will skip those.
The things I really wanted to write are the brain trauma of a stroke victim. Actually its not only stroke victims that suffer from brain trauma. An accident that includes a lot of bleeding on the brain or an anyurism can cause serious brain trauma. Injuries to the brain are very difficult for the victim. The rest of us can't see any hurt parts unless of course the victim is in a wheelchair or other forms of handicap, but in this case he looked perfectly normal. Jonathan lost his speech and that was the worst thing that could have happened to him, at least in his mind. He would have rather been stuck in a wheel chair then not be able to talk! If you can't understand that go ahead and tape your mouth shut for a day and see how you like it. You NEED to talk, you NEED to be understood, and you just NEED to be able to be heard. In his case he knew what he wanted to say but the connection to his mouth was messed up and he COULD NOT say the words. Sometimes he would make motions like he just wanted to pull out his tongue. Frustration was high at times! Comprehension was his other bigger struggle, and everything that was to be done looked big and impossible, even little things like cooking eggs for breakfast. I had been told by the therapists that I may not do everything for him, that I need to give him instructions and expect him to get it done. Now imagine this...he looks like a man because he is a man, he is my husband and he has 5 little boys. We sit at the table to eat and it takes so much concentration to get food on his own plate that he totally forgets about the 5 year old beside him. It would be easy to simply fill all the plates myself but I need to HELP him heal. I needed to remind him to cut the meat or fix the jelly bread etc..He would very willingly do anything but he could not see the need without being told. One time I was frying eggs for breakfast and I put them in the skillet then I walked away( on purpose) and I called out to him to finish the eggs. When I came back to the kitchen a minute later he had the flipper in his hand but he had no idea what to do next. I gave him step by step instructions. You have to understand that cooking eggs was something he always knew how to do, it was not a new task!!
There is another problem. I'm his wife, and I am not used to telling him what to do. I had a terrible struggle finding the balance in submission, encouraging him, urging him to try new things and keeping it all in balance. Communication is my love language. I can connect with people that talk with me. Conversation is a sure key to love and friendship. Now I needed to give love to my husband that could not talk. I could ask him questions but I also had to give answer options. One sided conversations are terrible. I was forced to talk to God more even tho' those conversations seemed one sided at times also. That first year was hard, beyond hard!
A stroke victim feels trapped inside his own body that simply will not follow instructions! The books told me that he would never be the same, that I could expect anger and depression. Stroke books give very gloomy pictures. The truth is that many times if not MOST times the person is mean and angers easily. I remember crying out to God and telling Him that I married Jonathan because I loved the person he was and I begged God to bring back the man I married.
Speech therapy continued in our home 5 days a week. A therapist came for 30 minutes every day until the end of July. She was a wonderful lady and continues to be a friend. Jonathan loved her. She understood him like few people did and he was comfortable with her. I was amazed at his ability in sensing when someone was comfortable with him.He could tell when a person talked with him just like a normal person but he could also tell when folks didn't know what to say and kinda wanted to move on. He sensed kindness when the person patiently waited while he tried to stammer out his words and he did not enjoy having anyone finish his sentence or interrupt him.
Brain trauma makes the victim extremely tired. In crowds he would feel like he was in a fog and he could not focus on anything. Evenings he would say his brain is so tired. His security was horrible. He would stay right beside me when we were at weddings or anywhere outside of normal.
Eventually, slowly, ever so slowly, to slowly to really know when it happened he got better and better. I remember at night when I was putting Carlin to sleep I would beg God to please do a miracle, please heal him overnight and make him talk. The next morning I would anxiously listen for those first words and my heart would sink. I was sure that He would be so honoured that it had to be a good request. That miracle never came.
At the 3 month check up with the brain doctor I asked her for statistics. How many people survive a stroke like he had. She looked at me and said," There are none, they usually die with a stroke so severe". I was shocked, stunned. I asked, " How much more can I expect him to improve?' She said," I don't know Mrs. Zook, if he doesn't improve more then this you have a lot to be thankful for." Again I was shocked. We had 10 more years of miracle life with him.
My plea to you is this. If you have a loved one that suffered from brain trauma please be extra kind. Overlook his flaws and encourage them LOTS AND LOTS AND LOTS. Feelings of failure are very real, everything looks difficult, and they hate the person they have become. They need someone to walk beside them and help them, someone that treats them like a normal adult and doesn't just make his life plans because he can't anyway. The truth is he very much knows when plans are being made around him and not with him. An adult always deserves to be treated as an adult whether you think they get it or not.
We didn't do it all right always. We struggled and forgave and loved and did it all over again. But we always had love. And that is why Feb. is a hard month. The prayers and tears of bygone years, the memories of love in the good years and the reality of a life so well lived and now gone....brings tears that are hard to stop.There is much more to his story, but this post must end.
I must also note that we had the most wonderful support during all his journey. Our church and families and our community has been the most generous caring folks you have ever seen, Thank you for your continued prayers.
