Dear Gary and Lisa Part III: Anything Is Possible
Dear Gary and Lisa:
The previous letter set expectations for your new pattern life. This final letter will introduce how you both have coped and the possibilities of what your future could be.
Find That Deeply Emotional Motivating Force
Prior to MS, you are not even considering starting a family. Immediately post-diagnosis, you are in even less of a hurry. Within a year, though, your first child will be born. This will be the best decision you ever made. The birth of that child and then her brother 20 months later will impact you in a deeply emotional way. As that healing force of life lies in your arms, you will instinctively make her a promise that you will know will not be easy to keep. That promise will be that you will walk into her high school graduation in 18 years without any assistance – no walking cane, walker, wheelchair or person to help. The same promise will be made to her brother. The desire to achieve those promises will be a huge motivating force in your life. It will be the vision in your mind that will motivate you to push that needle to self-inject a DMT that first time. It will be what will keep you 100% compliant with medication and medical instructions, to exercise and to eat a very healthy diet. Gary, the emotional need to reach your goals will make you do things you have no desire or plans to do.
The Magic Pill
I can summarize all that I have learned about how to best live with MS. It is what I call the “Magic Pill.” If I had begun taking this pill sooner into my now 25 years with MS than I did, I would be doing better today. Gary, I am making an impassioned plea for you to commence taking the magic pill straightaway.
To be clear, I cannot provide a guarantee that taking this pill will result in you never having to use a cane, walker or wheelchair. Nor can I guarantee that will it free you from losing cognitive function. Nor will it prevent experiencing any of the other many other MS symptoms likely to occur such as fatigue, pain, depression, spasticity, bladder or bowel issues. Based on my experience though taking this pill on a daily basis will help you be better than you would have been without it.
The magic pill is you, Gary. It is you who needs to take medication consistently on schedule. It is you who actually implements a plan of action agreed on with your health professional. It is you who chooses to eat a healthy diet. It is you who generates the motivation to exercise on a regular basis. It is you who needs to organize all of your medical records to better inform future decisions. It is you who needs to be informed about medication options, and not just rely on the medical provider expertise. You are the biggest variable in your outcome. Ask any medical provider – they will all tell you that it is the patient who holds the key to managing a serious illness. Period.
Living with MS will come to define you. It will shape your life in ways you had never previously imagined. Some good, some bad. This uninvited guest will transition into the uninvited friend. No matter how much you plead with this friend, they are not leaving. You will need to learn to live with this friend and be at peace with it. MS will constrain what you want to do. Yet it will also stop you from doing things on a long-term basis that are not in your best interest even if MS were not present.
When I was first diagnosed, I searched and searched for good news stories about those living with MS. I found none. As the first DMT had only recently been approved, there were only a few who were on DMTs and none of them for any length of time. Understanding the benefits of diet and exercise for MS were only in their infancy. Since then, many more DMTs have become available and have become more beneficial. Knowledge and acceptance of an appropriate diet plus the benefits of exercise to MS have become universally accepted.
Over my 25 years, I have known people who have lived with MS as long as I have who regularly run marathons. I know of one person who holds a record in long-distance open water swimming and another who has scaled all of the highest peaks in the world. I know another who has with his young children hiked to Everest Base Camp, trekked the Inca Trail to Macchu Picchu and summited Mount Kimanjaro.
I have been through periods where I have lost so much function that I did need a device to help me move. Where someone needed to help me move food to my mouth to eat. I have, though, kept my two promises and walked into two high school graduations without any assistance. These and other dreams I have still been able to achieve.
Being compliant on a DMT, eating well and frequent exercise will not guarantee that you will be capable of doing similar things. You will need some element of luck beyond that. If you are not doing these three things, though, luck will have less room to operate. And based on my experience if you are consistently doing these three things you will be doing better than you would have without them. Never lose hope, Gary and Lisa. Hope is the most important word in the lexicon of someone living with MS. Anything is possible.
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