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​Finally, by age 24, it was time to investigate, as the migraines’ frequency increased significantly, and the pain was intensifying.
 
The MRI revealed what I call the “monster” in my brain. AVMs tend to have bleeds or what most people know as aneurysms. The walls of the veins thin and eventually burst. I am extremely fortunate that I lived as long as I had without a bleed. Not to mention that I hadn’t ever taken any non-steroidal anti-inflammatory drugs, NSAIDs (thanks to my mom) or recreational drugs, and I had even been hit in the head as a child with a piece of concrete by a classmate and yet...here I was. Seemingly, a healthy adult with a time bomb in my brain. My journey was about to begin. A 10-year journey that would forever change my life. Because of the location of my AVM, I could not undergo a cerebral craniotomy (brain surgery) as it could result in blindness or death. I live in Northern Virginia in close proximity of Washington, DC, and I am extremely blessed to have access to such amazing medical experts. We were sent to Georgetown University for the first step in the process. 
 
I had my first cerebral angiogram (a diagnostic test using an x-ray that produces an image to help find blockages or other abnormalities) in 2007. For this process, doctors enter your groin at your femoral artery with a catheter. You are awake for this whole process, but it is a threshold consciousness, so there are times that you feel asleep and you half-remember what happened. The doctor guides the catheter through your arteries up to your neck and pushes a dye into your brain in order to see the AVM and take X-rays of its functioning. Afterward, they close the femoral artery. This can be done via hands-on pressure for fifteen minutes or with a collagen plug. The recovery is a few days of rest and no heavy lifting. I had a total of twelve angiograms (a type of x-ray used to examine blood vessels) over the ten years. They were painful because I could feel the catheter exiting my body and my body was sore; dangerous because the dye could affect my kidneys and I could bleed out from my femoral artery; embarrassing because the entire operating room (always teaching hospitals) would see me naked; and upsetting because the news was never good afterwards.
 
I was told that my first step after the angiogram would be to undergo an embolisation. An embolisation is performed like the angiogram, but you are fully anesthetised while the doctor injects Onyx, a liquid metal-like substance into the veins. Over time, the Onyx hardens and blocks blood flow through the AVM, forcing the flow to find a normal path. The doctors at Georgetown could only complete three of these procedures. They couldn’t get into some of the smaller veins of my AVM. These procedures took almost a year to complete,  and were some of the most painful I have ever felt; waking up to the endotracheal tube being pulled out of my throat after each procedure was difficult. In addition, I would get explosive headaches that made me feel like I was dying. My Mom had to bathe me and take care of me like I was unable to perform these tasks alone. It was an extremely tough year. 
 
After these procedures, I started experiencing episodes, which after awful testing, a seizure specialist diagnosed as visual seizures. My driver’s license was taken from me until the seizures were under control. I fight with these episodes to this day. They are painful, causing partial loss of vision, and while medicine helps, they remain.

MENTAL HEALTH Special for World Mental Health Day, October 10 2019

When James Withey was suffering from depression, he craved something to give him hope. No one spoke about recovery or healing. There was no light at the end of the tunnel, only darkness. And so James set about creating the sort of thing that he had needed at his lowest ebb; a collection of stories telling others there is hope, it’s not all blackness, you can get through this. And in helping others, he has also helped himself. This is James’ story

​Depression is a bugger. A real git. To be honest, I could use much stronger words than this and often do.
 
Depression has been with me all of my life in some form but about 10 years ago it hit me on the head with such force that I was unable to do function at all. It was like a fairy tale giant had taken his sledgehammer and was repeatedly smashing me in the face and then convincing me it was my fault that he was doing it. Nice eh?
 
I lost everything when depression came. I couldn’t work, I couldn’t concentrate, I couldn’t eat, I couldn’t sleep, I couldn’t see anybody, I couldn’t wash, I couldn’t laugh; I couldn’t remember who I was or what I was meant to be doing.
 
I was in crisis, but it was hard trying to convince myself I needed help. I felt I should be able to sort all this out by myself. None of my other male friends had depression, somehow, they were able to sort out any muddles they had in their heads by themselves, so what was wrong with me? I felt I wasn’t being strong enough or man enough. Real men don’t get depression I thought. If I was a ‘real’ man I wouldn’t be feeling like this, right?
 
When I started to feel suicidal, I went to Accident and Emergency because I didn’t know what else to do. I waited for 8 hours to be told that I was being ‘a bit sensitive about things’ and was given some Valium and told to see my doctor the next day. I told him how ill I was feeling, he sighed, like I had unnecessarily inconvenienced him, and reluctantly called the crisis team. I was prescribed anti -depressants and sleeping pills but things got worse, and worse and worse. And worse. After a month of being seen by support workers at home, and one more horrendous A and E visit, my life still felt at risk I went to psychiatric hospital for a week.
 
Now, psychiatric hospital is like a glamorous boutique hotel. Now wait, it’s really not, it’s the exact opposite. The staff wanted to help but were too busy and I was too scared. I kept to my room afraid to venture out into the communal areas. It was my necessary prison.
 
One afternoon, sitting on my bed (which was bolted to the floor) and looking out of my window (which only opened a few inches) I started to think about hope. No one had spoken to me about recovery, no one had said that there was any chance that things could get better. Only depression spoke to me, and it was shouting vile insults and telling me that I had no future. I suddenly realised that if I was ever going to get through, I needed to hear about hope.
 
When I got out of hospital, I went to see my psychiatrist.
 
“Where can I read stories about how other people manage their recovery?” I asked.
 
“Hmm.” He thought for a while. “I don’t think there are any.”
 
“What none?” I said.
 
“No, I don’t know of any. I tell you what, how about read this book, that might help.”
 
He handed me an enormous 500 page tombstone like book on depression, from an eminent psychologist.
 
“But I can hardly read a page.” I said. “There’s no way I can get through this. And anyway, I want to read something from other people with depression.”
 
Now thankfully sitting on my own bed at home, I thought, well if there aren’t any recovery stories, then maybe I need to tell mine and see if other people want to tell theirs too. What if other people wrote a letter to others experiencing depression, telling them that things can get better? What if I published these letters on a website for everyone to see? It couldn’t just be me that needed to hear that you could still live your life whilst managing depression could it? That’s how The Recovery Letters project was born.

The Recovery Letters website has around 70 letters at any one time, from people around the world, different genders, ages and all types of depression. The letters are so powerful because they reach out to the person suffering and say ‘We get it, we know that indescribable pain, we know how exhausted you are, how hard it is to get up each day, we’ve felt that too, but you know what, it’s gets better, we’re living proof of that’.
 
In 2017 a Recovery Letters book was published. It was a World Book Night title in 2018, is on the Reading Well list for mental health, (where GP’s can recommend useful books to patients), it has been published in Welsh, recently in German and amongst other accolades, Cosmopolitan magazine named it was one of 12 Mental Health Books Everyone Should Read.
 
The impact of the letters has been incredible. People often write and tell me reading them has got them through the night, that they feel understood and less alone. They say that reading about symptoms and feelings that they thought just peculiar to them, have made them feel validated and less ashamed.
 
Repeatedly, people tell me the letters have stopped them from taking their own life. This always makes me cry because the letters saved my life too. 

I had a choice. It was up to me to decide which way I was going to go. I decided right away to find a mental health counsellor, best decision in my life. I still see her now.
 
In 2012, I became a Rare Disease Patient Advocate
 
Why? I wanted to make sure nobody would have to ever go through what I did and to make sure that no one else would feel alone.
 
For several years I started out as an advocate that spoke to the government officials first, to raise awareness for sarcoidosis then I branched out for all rare diseases.
 
In 2015, I was in so much pain both physically and mentally. I was being told treatment after another treatment and nine surgeries later that I was not responding to any of the medicines they have used for sarcoidosis patients. That they were not giving up on me, but don’t know what to do with me at the same time. I started to get in a real dark place, just because you have a counsellor it doesn’t mean everything is going to be fine. You still must believe what you are saying to yourself and to others. Well I stopped believing it. In September 2015, I called my counsellor with thoughts of suicide. That is right Mr. Strong Guy was giving up.
 
I was the guy who was positive, the guy everyone called for advice and to pick them up. I called it: “The Tears of a Clown.” It is a song from the sixties I grew up hearing from my parents. On the outside I was smiling, but on the inside, I was falling apart. Yes, that person, ME, was ready to give up on life. I knew exactly how I was going to do it too. I had the opportunity to do it. I rationalised by saying I am being a burden on my family, and they would be better without me.
 
What made me make that call to my counsellor that day I truly don’t know for sure, but I believe that there were two main reasons, my wife and daughter. Another part of me believes I called my counsellor because I was my Mother’s child. She was sick for most of her life and most of mine and never gave up. I am not a quitter! I ended up going into the local hospital for a 72-hour watch, which basically means on suicide watch. It changed my life. It made me become more aware of not only my mental health but other people’s mental health too.
 
In the past two years in the sarcoidosis community of people I know, there have been about 100 sarcoidosis patients that have passed away from sarcoidosis or related illnesses. That is a lot of people, too many, but what makes it worse is I know in that same time about thirty of them committed suicide.
 
This isn’t just a sarcoidosis problem. This is a rare disease problem! When you are dealing with a disease that is hard enough, but when you are dealing with a disease that has no cure it sure can work on you mentally.
 
If there is one takeaway from this blog, I want it to be:
 
Don’t think you are alone or that you are too strong to seek mental health assistance!
 
You know what makes you strong?
 
ADMITTING YOU NEED HELP!
 
In April of 2018, I was told by a group of amazing specialists, both sarcoidosis and Parkinson’s that I have been reclassified from chronically ill to terminally ill. I have sarcoidosis in almost every major organ except my liver and kidneys. I was given a couple of months to live.
 
Guess what?? I am still here! You want to know why I think I am here? For me being sick is 10 per cent physical and 90 per cent mental. ​

Please visit our Mental Health Services Directory for a quick reference guide to national and international mental health services.