“How do they look?” my husband Jake asked. And all I can say is, “Absolutely ridiculous!”
We are staring at each other in the dressing room at Cabella’s as he models a new pair of bib snow pants. We have just spent a comical and exhausting 5 minutes trying to pull the snow pants on over his legs and up his body while he is sitting in his wheelchair. And now I’m just staring at him because these are not just any snow pants. They are an unreasonably expensive pair of high tech camouflaged, thick down-filled snow pants that were designed for deer hunting in extreme winter conditions. And it occurs to me that it’s funny we are in Cabella’s, let alone asking the staff for tips on deer hunting attire, when the closest either one of us has come to hunting deer is riding our horses past vacant tree stands in the woods. But Jake had a good theory. What sport needs the warmest gear? (Hint: Not a skier) Naturally Jake thought of the hunter, quietly sitting motionless for hours in the freezing cold, not generating any body heat from physical exertion, which is exactly what brought us here, to the Cabella’s dressing room for snow pants. These are the ridiculous things you do when you suffer from paralysis. When you can’t move your legs and generate your own heat these are lengths you have to go, just to stay warm on a 60 degree day.
Jake’s mobility issues already keep us from all kinds of activities that we would love to do. But I’m here to tell you that SCI (spinal cord injury) manifests itself in many other frustrating forms beyond mobility, especially when you are an avid outdoorsman. One of the many things that paralysis robs one of is the ability to control body temperature. Jake often finds himself staring out through a window on a gorgeous day, prevented from being outside because temperatures are not absolutely ideal. Jake often jokes that he can spend all the time in the world outside as long as the temperature is between 75-78 degrees.
Typically, as is the case for Jake, individuals who suffer from SCI are unable to adjust their body temperature below the level of injury. In Jake’s case, he has a C7 spinal cord injury, which means he has severely impaired or no sensation from his upper chest down. While the sensory receptors in the skin still work and are constantly sending messages about being too hot or too cold, those messages cannot reach the brain for interpretation and reaction. Sometimes Jake will feel coldness and the agonizing inability to warm up, while other times, specific parts of his body will turn ice cold without him even realizing it. As we prepare to sleep, a nightly question heard in our household from September to May is, “Are my knees cold?” And almost every night, the answer is yes, they feel like ice cubes! I know that his knees are sending the messages loud and clear that they need help warming up, but those messages never reach his brain. This means Jake’s lower body doesn’t shiver, produce goosebumps, or constrict the blood vessels to allow less blood flow in the outer capillaries, which reduces heat loss as the blood circulates to the inner core – all of these are ways a healthy body works to maintain a stable temperature. It also goes without saying that a big contributor is lack of circulation due to his permanent sitting position. All of these natural physiological processes are unavailable to Jake, putting him at risk for hypothermia and frost bite when we do decide to venture outside on a cold day, and just making him generally uncomfortable in a slightly cool restaurant or house.
So what do we do? We buy flannel lined jeans and ridiculous and expensive high-tech down-filled snow pants to wear outdoors for when the temperature drops below 70. At some risk of burning himself, Jake uses a heated blanket in bed to provide the heat his body can’t provide itself. Jake drinks more hot tea per day than the Queen drinks in a week, all in an effort to stay warm. And of course we always try to plan ahead and do our best to avoid being exposed to temperature extremes in the first place. But one thing we can’t do is cheat, for example using heated socks or foot warmers (as much as we’d like to), as Jake’s body would also not be able to tell if they were getting too hot or burning him.
Which brings me to the flip side of this dilemma.
Two days after our fantastic wedding celebration with family and friends, Jake and I landed in Paris, super stoked to begin our honeymoon. We had a wonderful first day planned. We would pick up our rental car, and take our time driving along the Normandy coast, stopping into little villages along the way to explore, eat and drink, ending our day at a bed and breakfast in Bayeux. Besides the obvious romanticism of France, we chose it over a tropical island because it would be relatively cool enough for us to enjoy without worrying about Jake overheating. Then, in the days leading up to our honeymoon, we read that France was suffering one of their worst heat waves in years – a heat wave in a country that generally doesn’t utilize air conditioning because it rarely gets that hot!! But we stayed calm. We stayed calm right up to the point where we found ourselves grinding to a halt in bumper-to-bumper traffic leaving the airport. It turned out that the 100 degree weather wasn’t the end of the cruel joke. Twenty minutes into our drive as we crept through an exhaust filled tunnel, we realized that our rental car’s air conditioning was broken! That’s when the relaxing honeymoon started to fall apart. Eventually we did leave the congestion of Paris behind, but we had to skip our relaxing tour of the coastal towns. When Jake begins to heat up it is only a matter of time until he feels like he is cooking from the inside out. Once he passes a certain balance point his body is overwhelmed by heat and the situation can actually become very dangerous. We sped down the motorway windows down, pummeled by wind, Jake gulping water and bracing against the onset of heat stroke. When we arrived at the non-air conditioned B&B, Jake stripped to his underwear and I covered him in cold wet towels. By that point, his skin had turned red and patchy and he looked and felt exhausted. It took him the rest of the afternoon and evening to recover. We were burned by paralysis again, this time quite literally. (Editor’s note: We traded in our rental car the next day for one with functioning A/C and went on to have a fabulous honeymoon!)
So just as we can’t enjoy days below 70 degrees without proper planning, we also can’t enjoy the outdoors when the temperature climbs into the 80s or above. A hot day can be uncomfortable for a regular person, but for Jake it can be downright dangerous. The same way Jake’s body cannot heat him up when he is cold, it also cannot cool him down when he gets hot. A healthy body will respond to warm temperatures by perspiring, which draws heat out of the body in a liquid form that then evaporates off the skin, wicking away the heat. At the same time the skins pores open wider and the capillaries in the skin dilate to fill the blood vessels distributing the heat of the body closer to the surface so the blood can cool before recirculating back to the inner core. With a spinal cord injury, Jake cannot sweat below his level of injury, nor do the pores and capillaries receive the signal to dilate. This causes the body to rapidly overheat which leads to symptoms such as nausea, headache, exhaustion, high blood pressure, and Autonomic Dysreflexia (which I’ll cover in another blog someday soon). The real fear for people with SCI is that overheating, which can happen quite quickly, can lead to heatstroke, ultimately manifesting in damage to the kidneys, heart and brain, possibly even causing death.
I’m sharing these stories to demonstrate that paralysis from SCI is not just about the inability to stand or walk or play soccer or go for a hike. Paralysis is not just an unlucky hand of cards dealt to a young man who is still healthy, happy, well-adjusted and doing great. Paralysis is about the secondary complications, the inability to control temperature or blood pressure, to go to the bathroom naturally, or to feel pain that could be a warning of a potential pressure sore. These problems can’t be fixed by walking across the room in an exoskeleton. That is why our advocacy group is rallying for increased funding for scientific medical research towards curative treatments for SCI survivors. The curative treatments we are advocating for are those that bring functional improvement, which includes recovery in the way of bladder, bowel, and sexual function, temperature control, sensation, standing and eventually walking. These functional improvements are the ones that will improve the quality and longevity of life for those living with paralysis. This is why we will continue to advocate for funding to support the research being done right here in Pennsylvania.
I continue to share our story in the hope that it leads to a deeper understanding of the importance for curative treatments of SCI and belief in the reality that researchers are close to significant breakthroughs. If you are moved by this blog, please support our bill by taking one (or all) of the following actions:
1) Call or email the Senate Health and Human Services Committee members listed here and ask them to support SB 31 and bring it to a vote. You can also call or email the House Health Committee members listed here and ask them to support HB 385 (the sister bill to SB 31) and bring it to a vote. These are the two committees where the bills are sitting, and without the support of these Senators and Representatives, our bill cannot move forward.
2) Sign our petition (if you haven’t already) and
3) Possibly most importantly, SHARE this story with your friends. In order to be successful, we need an extended network of supporters.
Thank you for your ongoing support.