Carl Toth Recovery Fund
Sometimes even to live is an act of courage. - Seneca
Carl Toth, a talented artist and gifted teacher has been on a very long journey that began over 10 years ago when he was injured in a bicycle accident and suffered a Traumatic Brain Injury (TBI) that nearly killed him. The years since then have been filled with one heartbreaking event after another, especially a catastrophic seizure and stroke in March 2011. Again he barely survived, and sadly he was left without the use of his right side or the ability to speak.
The years since the TBI in 2004 have been unbelievably difficult but, remarkably, Carl never stopped trying to get better. Until now. Since March 2014 he’s been in a nursing facility, near Cleveland, where he’s losing ground everyday. He doesn’t seem to have the strength to make the effort anymore.
Carl is such a loving, sensitive, generous and very funny man. He was the Artist in Residence at Cranbrook Academy of Art for over thirty years and he was loved and respected by many. His former students and colleagues will tell you that he literally changed their lives. People describe him as the “nicest person I’ve ever known” or say “I wouldn’t be where I am if it weren’t for Carl.” He’s also a wonderful son, brother and dad—willing to guide and support others, always with a brilliant smile that could light up your day on his handsome face.
After the stroke Carl went through a lot of medical difficulties. but in November 2011 we moved him to Kentucky where he spent over two years in home care. He worked hard and made amazing progress physically and emotionally. He learned to walk and to feed himself. He was engaged and active everyday. Even though he had serious phyical and mental deficits he was usually able to keep a positive, upbeat attitude.
Carl Walking his dog Beacon in July 2013
Fast forward to the present. After a bad fall, which caused him to lose his ability to swallow, he’s back on tube feed. He doesn’t get much physical therapy at the nursing facility so he’s no longer strong enough to walk much. He’s had two serious falls and five hospitalizations in the past 15 months—all terrible setbacks. Worst of all, there’s not enough mental stimulation to keep his brain engaged. When he’s alone, he just roams the halls in his wheelchair. Sadly, we don’t see that smile much these days and we’re so afraid he’s giving up HOPE.
For over ten years now Carl has shown remarkable determination and courage. But now, he’s lost so much he can’t see the reason to keep trying. He has nothing to look forward to because in his mind he’s not making progress. Many days he’s so depressed that all he does is sleep. He follows me to the door when I have to leave and gives me a look that breaks my heart.
Carl needs your help, now. We can give him back everything he’s lost and more—things we all take for granted--if we bring him back into homecare and give him the kind of rehab he deserves. With the funds we raise we’ll make the house safe and accessible (a lift, an accessible shower and a new custom wheelchair). We'll also need the help of caregivers and therapists until he gets stronger. With your support, we can literally get him get him on his feet and walking. When he lost his swallow, Carl lost one of the few pleasures he had left in life—the taste of food. We taught him to eat real food before and we can teach him to eat again.
But that’s not all. If Carl could just learn to communicate it would make him so happy. Once he’s stronger we’ll take him to specialized therapy for his aphasia, which is “the loss or impairment of the power to use or comprehend words which usually results from brain damage” (common in stroke cases).
Carl has never had this type of therapy because it wasn’t available in Kentucky. An intensive aphasia program costs $20-$30,000 (including travel to the program).
When Carl can’t make himself understood he pounds his fist and you see the exasperation on his face. Imagine being unable to share your needs, how you’re feeling, or simple things like what you'd like to eat. As a teacher, Carl spoke for a living so the loss of speech is especially hard on him. We know “he’s in there,” but he has no way “out”—he’s in a prison inside his own head. You can help to break him out of that prison.
Carl has shown us that he can make great progress when he’s getting the focused care and love he deserves at home. That’s why his siblings (Beth, Linda, Jim and Terrie) along with friends, colleagues and former students have created this campaign—to give Carl back his HOPE for a better life. We can’t let him “give up.” Your support now can help to put that wonderful smile back on his face, and get him on the path to recovery.
Carl "says hello" to all of his friends out there 5/1/15
If you’re interested in learning more about Carl’s long journey the backstory is below:
As the Artist in Residence in Photography, Carl had been teaching at Cranbrook Academy of Art for over thirty years, when, in May 2004 he suffered a Traumatic Brain injury (TBI), which nearly killed him. He’d been riding his bicycle on the campus in Bloomfield Hills, Michigan, when campus security got an anonymous call reporting a man “lying in a pool of blood.” He hit his face on the concrete when he fell, causing a terrible brain bleed, resulting in serious brain damage.
In August 2004 Carl had his first serious seizure, a common side effect of the TBI. This meant that he had to be on anti-convulsant meds, which impacted his memory, his energy and his mood.
By all appearances, Carl recovered pretty well from the TBI. Physically he was 100%. The biggest problem was that his short-term memory was gone. He couldn’t recall if he’d eaten breakfast, taken his meds or walked the dog. He also damaged the part of his brain that controls “executive function." Things like decision-making, initiation and completion of tasks, and controlling his temper became difficult for him. While this type of damage is very common in TBI the impact is largely “invisible” to outsiders. People don’t even know you have a problem. But these deficits have a devastating impact on the life of the person who suffers from them.
Even though Carl had lost his ability to make new memories, with the help of assistants and his family, he was able to go back to teaching, a sure sign of how much he loved his work and how very good he was at it. He invested tremendous effort to keep on teaching. He made “flashcards” of his new students and copious notes about everything. He took to wearing cargo pants to hold the camera and voice recorder he tried to keep with him (except when he forgot them of course) so that he could keep a grip on what had happened throughout his day. In 2006, The Society of Photographic Education named him “Honored Educator”—another sign of how gifted and respected he was as a teacher.
Still, Carl’s inability to make new memories and other issues caused by the TBI made his life overwhelming. He became depressed and anxious and frightened. Little things would upset him terribly (like not remembering to charge the camera.) His office filled up with “organization supplies”-- file folders, pencils and post-it notes (oh so many post-it notes) because he couldn’t remember that he’d already bought more than enough of all those things.
He worried about everything that he couldn’t remember and he couldn’t remember anything. Try to imagine living like that.
In June 2007 due to the cumulative effects of his loss of memory, Carl reluctantly retired—another blow to his spirit and his self-confidence. He had to leave his beloved Cranbrook where he’d taught, and lived for most of his life. He had already lost his “self,” but now he would lose most of his identity--his job (and income), his home, his support community and everything that was familiar to him. It all disappeared at once. He had nothing left.
I try to put myself in Carl’s place at that time, but I can’t. Those were very dark days for him, but he was too embarrassed to reach out for help. He was lost.
After he left Cranbrook, Carl tried to learn to cope with his situation in any way he could. He went twice, (2007 and 2008) to Radical Rehab, a program in Kentucky, designed for people with TBI. At Radical Rehab Carl acquired some helpful skills but imagine how difficult and frustrating it would be to “learn” anything if you have no memory. Living away from home was also hard on him. In December 2008 he went back to Michigan.
Circumstances in Michigan were very strained and Carl didn’t do well. So in February 2009 he came back to Cleveland and moved into an apartment attached to the house where we had all grown up.
At first he had a rough time adjusting. Then he started doing Neurofeedback therapy, which clearly helped him cope with his circumstances. He seemed to be on a more even keel. He was happier much of the time and was getting into a more positive place. By 2011, Carl had even started working on a new lecture, thinking that he could become a visiting artist at schools and colleges around the country. Finally—the “smile” was back.
Then, on March 17, 2011, I went into the apartment to take Carl to his therapy and found him on the floor. He had had a devastating seizure. We would later find that it was so bad that his kidneys failed, his liver failed and his blood pressure dropped dangerously low. One doctor gave him a 15% chance of survival. But survive he did.
The months immediately after the seizure/stroke presented him with one medical problem after another. Carl was so sick. Fortunately, sister, Terrie, who is a Physician’s Assistant, had come up to Cleveland from Kentucky to help manage his condition. Without her presence Carl would have died.
About 10 days after the seizure the doctors took him out of an induced coma and we discovered that he had also had a horribly debilitating stroke. He had lost the use of his right side and he could no longer speak.
Because the seizure he suffered was so prolonged and severe Carl developed a condition called rhabdomyolysis, the breakdown of muscle tissue that leads to the release of muscle fiber into the blood and that often causes kidney damage. It was this condition that caused his kidney failure and shock liver. He needed 17 liters of fluids in the first 24 hours to keep his blood pressure up and then he had to have dialysis.
He also acquired an infection the doctors couldn’t pinpoint so they loaded him up with antibiotics. Because of this, Carl acquired a bacterial infection in his gut called C.difficile, which makes you incredibly sick--and can kill you. Any nutrition Carl got went right through him. His weight went down to 112 pounds.
On April 13, 2011 Carl was transferred to a rehab facility where he did better than we had hoped given the severity of the stroke. The therapists helped him start walking at the rail. He was making good progress in other therapies too. But then he started to do a lot of sleeping. The therapists insisted that he had “plateaued” which meant that he wasn’t making progress. On May 9 Carl was transferred to a nursing facility where he continued to sleep too much. On May 24 we took him to a neurologist who discovered he was toxic on one of his seizure meds, which was causing the excessive sleepiness. This was only the first of numerous “medical events” that would hinder Carl’s recovery over the coming months.
Carl was admitted to the hospital and after three weeks of monitoring, he was prescribed a new seizure medication. Carl’s seizures had never previously been controlled with only one med and we made his neurologist aware of this, but the doctor reassured us that this was a new medication and he was confident that it would do the job. Carl was transferred back to a rehab facility. Five days later, on June 22, he had another serious, prolonged seizure. He was rushed back to the hospital.
This stay at the hospital was even more of a nightmare than the previous ones. The doctors loaded Carl up with anti-seizure meds, essentially turning him into a vegetable. Then they missed the fact that he was having prolonged sub-clinical seizures (seizures don’t have any visible symptoms). He ended up needing a tracheotomy to breathe. On August 7, while in a Step Down Unit, Carl took a serious fall in the presence of medical personnel. The next day we transferred him to the other major hospital in Cleveland.
Within a few weeks Carl’s meds were reduced and the tracheotomy was removed. On August 24 Carl was moved back to the rehab facility. But he continued to suffer terribly from the C.difficile and he was miserable. He was dropping weight. Worst of all, he wasn’t engaging with his surroundings. We were afraid we were going to lose him, again.
Finally, in November 2011 Terrie and her husband, Jim (also a Physician Assistant) very graciously took Carl and me into their home in Kentucky to try to bring him back to health.
With her help and that of some very devoted caregivers, Carl made wonderful progress. He learned to feed himself and to walk long distances (up and down stairs, too) with the help of only one aide. He had plenty of medical setbacks, including eight hospitalizations from November 2011 to July 2012, but he worked hard and he got better.
In February of 2014 we moved Carl back to Cleveland where we hoped to get him more intense rehabilitation not available in Kentucky. But the past fifteen months have been more of a set back than the step forward we had hoped it would be. We must get him home where he will at least have a chance for a better future.
Carl remains a very special person and he has shown tremendous strength and commitment to getting better. When he’s feeling well and engaged he’s still charming and funny. We feel more blessed than ever that he’s our “big” brother. Right now he’s in a kind of pain that can’t even be described. He "knows" much more than people give him credit for and he knows he’s losing ground. If we give him the chance he needs and deserves he can and will get better.
Please help us make this happen for Carl. And thanks.
“What sunshine is to flowers, smiles are to humanity. These are but trifles, to be sure; but scattered along life's pathway, the good they do is inconceivable.”
― Joseph Addison
I just wanted to do a quick post to let you know that Carl will have his 70th Birthday tomorrow December 7th. Please, if you have time, send him a greeting or a post card just to say hello and Happy Birthday via this website or if you want to send a “physical” card or note you can mail to:
20265 Emery Road
North Randall, OH 44128.
It’s been a rough year for Carl. He was in hospitalized in April for pain management because of his worsening Post-Stroke Central Pain and then three times for sepsis (systemic infection) from pneumonia and pleurisy, all from the end of May thru August. Then he moved to a different nursing facility at the end of September.
Needless to say I’ve been busy. Since Carl can’t speak for himself when he’s sick and/or in the hospital I need to spend a lot more time with him to make sure he’s being treated appropriately. People who don’t know him always underestimate his baseline and how much he understands what’s going on around him.
This past year has caused me to make an important decision. Right now Carl is doing okay, but my hopes of getting him “stronger” before I bring him home is clearly not going to happen. Nursing facilities are not set up for someone like Carl to make progress. He keeps losing ground. I really thought that with therapy and he would regain some strength and that would make bringing him home easier. But he hasn't stayed healthy long enough to benefit from the little bit of therapy available. I can’t watch what’s happening to Carl any longer, it's breaking my heart and he deserves better.
I need to bring Carl home as soon as I can finish fixing up the apartment and figure out how to get enough help to manage him 24/7. The apartment is easy but will cost some money for finishing the electrical and other odds and ends. He needs some furniture and appliances. The home care, on the other hand is complicated and expensive but I can't manage him totally alone. I’ve been talking to several organizations about home care and I know there is some help out there I just don't know how much. I'll keep you posted.
These past two years have been hard on Carl and on me. I don't know what the next two years will bring, but I do know that I have stop waiting to for Carl to get "better" and bring him home as soon as I can. Please help us if you are able.
I have to say that there is still nothing like the moment, most days, when Carl catches sight of me as I get off the elevator and he gives me that SMILE--“like sunshine is to flowers”. It’s time to bring him home with a little help from his friends
All the best and thanks to everyone who's been so kind and supportive.
Tensin Gyatso, the 14th Dalai Lama
Carl and I are so glad that the weather is finally starting to break here in the Cleveland area. We actually had a couple of good walks this past week. I know everyone has had a whacky winter, but it’s been hard on Carl because he gets so bored and unhappy when he can’t get out and about. He was in a cranky mood the other day and I took him to the pet store. Getting out and seeing the birds and little animals totally flipped his attitude. What he really needs is a cat that will sit on his lap, but that will be for when he comes home. For now I’m thinking of a fish tank. We saw some African Cichlids that were fascinating to him.
I found an app that Carl has been using in a way that seems “artful” to me. It’s really a modified tangram puzzle game, but he uses it more to create what I think of as collages. I haven’t yet figured out how to post videos on this site (sorry), but here’s a still of what he does with the pieces--constantly re-arranging them until he’s satisfied. Ever the artist.
Carl is getting Botox injections tomorrow and although it’s painful for him it really does make him feel better, and it’s good that he’s having them now since we’re going to be more active again.
In the next couple of months I hope to get the final issues in the apartment finished up so that he can make the move. More later on that front.
Thanks as always to those of you who think about Carl’s happiness and well being. I’m so grateful for your kind thoughts and support. Please don't forget to share this campaign with friends, family and colleagues!
Mustafa Kemal Atatürk, translated from Turkish
Just a very quick up date to let everyone know (albeit a little late) that December 7 (yesterday) was Carl’s 69th Birthday!!!
He’s doing okay these days although he’s due for his Botox in a couple of weeks. Unfortunately, during, the two or three weeks before his injections he has more pain in his arm and leg so he’s just not as happy.
The cold weather makes getting out and about really difficult (Carl does not like the cold!!!) and that’s a bummer. We both miss our lovely walks in the nearby park. The good news is that my knee surgery went very, very well. I was back seeing Carl everyday within a week or so and I’m very grateful that I healed so quickly.
Carl and I have been spending time using the tablet to play games and trying to stretch his mental muscles. I’ve also been trying to teach him to BOWL on the tablet. For some reason he also likes to watch me play solitaire. I also found some puzzles that he does pretty well by himself. Sometimes I’ll leave the tablet in front of him and go out of the room. When I get back, he’s done the whole thing.
The work on the apartment moves slowly but it continues. I’m determined to get Carl home in the spring. I'm not sure yet how to manage it though. He needs full time care and I can’t do it alone. It’s hard, emotionally, to go to the nursing facility, but I love to see him each day, especially when I get that smile!
Please forgive me once again for not getting thank-you notes out to all of you who have been so generous to Carl. We do thank you all so much.
As you rush through the hectic days of the next few weeks please think of Carl with love and fond feelings and help the campaign by sharing it with your friends on Facebook and in any other way you can. If you have any ideas about other ways to fundraise please let me know through the GFM site and I will get back to you.
I would thank you from the bottom of my heart, but for you, my heart has no bottom.
Carl, I just saw this posting so we are a little late in wishing you a happy belated birthday. Bob & Cathy
Happy Birthday old friend! Love ya, man!
Dear Carl and Judy, I remember you both, 35 years later, with such affection. Daniel Libeskind reconnected us in a conversation last month. I send my love and good wishes. xx Stacey Mancuso (1979)
To Beth: a friend of mine saw (and shared) my post about Carl and passed this link on to me for sharing with you. Perhaps it will be of some assistance to you and to Carl. I certainly hope so. http://www.centerforcognition.org/English/index_English.htm All the best to you.