On the anniversary of his diagnosis of MS, Sideshow Collectibles sculptor, Matt Black squeezed out some time to talk about himself and how he’s been dealing with the disease, while getting work done in time for Comic-Con International: San Diego 2017.
jman: Matt, as always, let me first thank you for taking the time out of your schedule to answer a few questions. We usually talk about what you’ve been working on, but I’d like to switch things around this time and ask you some more personal questions about yourself. You recently were diagnosed with MS. What exactly is MS?
Matt Black: Multiple Sclerosis is an autoimmune disease that causes the body’s own immune system to attack the central nervous system. The lining of the nerves are eaten away by your antibodies causing a wide variety of symptoms. These can include loss of motor function, cognitive difficulties, blindness, or even paralysis.
jman: How were you diagnosed?
MB: My symptoms started roughly one year ago. It began with some numbness in my eyebrow of all places. From there it very rapidly spread to the right side of my face, and got much more painful. Like electricity combined with fire and ice. Over the next few days the entire left side of my body was effected. i lost hearing in my right ear as well. After many weeks of tests including a spinal tap, my neurologist was able to determine I had MS.
jman: I hate to sound like an arm-chair therapist, but…how did that make you feel? I’d imagine it has to be a least a little depressing.
MB: Honestly, hearing that diagnosis was a huge relief to me. I feel horrible saying this, but until then they had not been able to rule out brain cancer. So, it was a mixture of relief, and the feeling of guilt that so many people out there were not as lucky with their diagnosis. After finding a doctor, I really like we were able to determine that I have actually had this disease for over ten years.
jman: Wow! Ten years?
MB: Yea…looking back its easy to see the signs. Lots of fatigue, depression, strange
electric sensations, etc.
jman: How do you fit into the segment of the population that generally is diagnosed with MS? I’ve heard before that it tends to affect older woman more. Is that true or just a misnomer?
MB: Unlike many diseases, MS does not have a genetic component.
jman: So, it’s not genetic?
MB: No. If you have a family member with the disease, your chances of acquiring it are only marginally higher. Which is good news for my daughter. MS is a very strange illness. And, yes, it affects mostly women. Only one in 4 people afflicted are men.
It can present itself at any age, but mainly it’s seen in people middle aged or higher. It also tends to affect people in a band around the northern hemisphere, and southern hemisphere, steering clear of the equator. Another strange anomaly is that it tends to infect people born in the spring. The more I learn about it, the more mysterious it seems.
jman: Really?!?! That’s bizarre. Do you know why that is?
MB: Not really. It’s a bit of a mystery. MS has a strong link to Vitamin D absorption. People with MS have D deficiencies. It could be connected to the sunlight during those times of the year, or environmental factors. Those areas are more industrialized, and people are exposed to more toxins. There are just so many factors.
jman: You mentioned you were relieved when you received the diagnosis, initially. How about afterward? Has your view changed at all since then?
MB: My attitude has been positive, and I work very hard every day to keep it that way. My wife has been my champion. She worries a lot about how I will progress, but we are doing everything in our power to slow its effects.
We have had a lot of highs and lows in the last year, lots of set-backs. Initially I was taking daily injection of Copaxone (an injectable synthetic protein that protect the nerves of the brain and spinal cord ) which had too many side effects. I had a severe anaphylactic reaction on two separate occasions. Stopped breathing and passed out.
jman: Wow! I’ve had anaphylactic reactions before. But, never passed out or stopped breathing.
MB: Yea. The works.
jman: What happened after that?
MB: After that I quit conventional meds altogether. No medication can slow the progression, they only treat the symptoms. So, we opted for a more natural approach. I’m following the Wahls’ protocol, this is a diet in which you eat only items in use 100,000 years ago. It’s a massive lifestyle shift, but totally necessary. It has been shown to slow my eventual, and inevitable decline. Luckily for me my wife is an amazing cook, and prepares everything I eat.
jman: So, no processed foods? No goodies?
MB: Yes, Exactly. It’s a bummer not having any beer, or candy ever again, but I REALLY like being able to walk.
jman: How do you feel since changing your diet? Any noticeable changes?
MB: Since making the change, I feel so much more healthy. It’s a very difficult transition, especially since we are inundated with toxic foods everywhere we go. After making the shift, you really realize the affect food has on your body. Then, after eating in such a clean way for several months, you REALLY notice what happens when you slip up. The effects are immediate. The diet I’m on is really something everyone should be doing, but for most, it would take a catastrophe to get them to wake up.
The most important component is always going to be attitude, though. I am truly grateful to have MS for many reasons. It has made me really appreciate what I have, and take the time to enjoy every day. I am also very grateful that it’s me who has it and not another family member. I just could not bear seeing my child go through this.
jman: That I can relate to. I have four kids of my own, and would not want to watch them go through anything like that, either. Switching gears a bit, though, has MS affected your work at all? Will it at any point affect how you do your job?
MB: I don’t know what the future holds, but I do know that today, I’m working. I can’t expend too much energy worrying about the future. It’s going to happen regardless of my worry of it.
jman: Understood. Part of keeping a positive attitude, I suppose.
MB: Exactly. My symptoms at times can be a drag. I have very little feeling in my left hand, and intermittent episodes of relapse here and there. However, I have been doing this long enough that when I sculpt I am not fully aware that I even have hands. It all takes place in the mind for most artists. Sometimes, I have to keep an eye on “lefty” when I’m typing, but other than that I’m working at full pace. Right after I was diagnosed, I took a few weeks to really reflect and rest, but after a while I got sick of laying around. I can’t just sit and molder. I’m too much of a workaholic to be lying down for too long.
jman: Time waits for no one.
MB: Right. Plus, I work for a VERY supportive company as well, so that helps.
jman: Has having MS changed your view of life at all?
MB: Dealing with this progressive and debilitating disease has 100% changed my outlook on life. I have never had it easy, and it looks like I never will. There are always going to be circumstances in life you can not change, but you can ALWAYS change your outlook. I have every right to be a victim, and feel sorry for myself. I have had ample opportunity throughout my life to do so, but what good will it do? Sure, I have the added burden of this disease, but it’s not going to stop me from being happy.
jman: You have a really great attitude. We’re friends on Facebook, and while everyone knows that Facebook isn’t “real life,” I have to tell you that you are very positive about it and seem very motivated not to let MS get the best of you.
Is there anything that you’ve been working on lately that you want to share?
MB: Oh so much I want to share!! Damned NDAs (Non-Disclosure Agreements)!!! As always, I try to snag any and all of the Star wars projects. If you see some star wars characters being released from Sideshow, you can bet I had a hand in creating some, or all of them.
Many thanks to Matt Black. Check out all his work at Sideshow Collectibles.