Hearing the words, "I am sorry, I believe you have ALS." can be some of the most devastating words you will ever hear in your life. But it doesn't have to be true. ALS does not have to win.
My husband Jim Hilliard, an accomplished Orthopedic Surgeon, avid golfer, gourmet chef, an amazing husband and father, heard these very words on November 2, 2017. His diagnosis was confirmed in March of 2018. Months were spent hoping and praying it was something else! An old football injury, the broken neck in Medical School from a head-on car collision....a pinched nerve! Surely not ALS.....and all the while you are googling what this means....asking the question, "Surely the doctors are wrong?" Since my husband is a doctor...he had a strong sense from the very beginning what he was dealing with....that perhaps was the cruelest thing of all.
We cried, we prayed, we researched everything we could find and yet.....Jim still has ALS. We have come to accept it and rest in the knowledge that we only have to face one day at a time. We don't have to know the entire process of how this disease will play out...the truth is, we just don't know. Jim's ALS progression seems to be slow and we are hoping it stays that way.
We have gone to great measures to try every treatment, tidy up things in our financial and familial word and research, research, research. We have updated wills, consolidated finances, and simplified everything. That is what ALS does...causes you to shift to short term mentality.
Recently, ALS TDI reached out to us to share some things that we would want people to know about ALS. So I deferred to the expert and asked Jim what he wants people to know about living with ALS....he said, "I don't really want to talk about it, because when I talk about it, it makes it real." That kind of sums it up nice and tidy doesn’t it? It's hard to talk about.
When I asked him what has changed in his life since being diagnosed, his response made me tear up and beam with pride at the kind, sensitive, passionate husband I have. He said, "Since being diagnosed, our marriage is incredible. Our relationship is stronger and deeper and I am grateful for that." He also said, "Our friends and family have been such an amazing comfort the way they have come around us and shown us such love and support. I love our Tribe “He added, "I have more time to read and learn and study the Bible." Melt my heart. Oh and...."Before I was diagnosed with ALS I thought there were too many handicapped parking spots and now there are not enough!" Chuckle monkey. I love his sense of humor! Jim's final comment on what he would want you to know is, "ALS just sucks." A sentiment shared by 100% of the ALS community.
I can tell you that one thing that has happened along this journey is a deepening of our faith. God is truly big enough to help us navigate this journey. We were never promised a life without struggle, only that HE would be with us and meet our needs as we navigate the struggles. It is true. Learning to live with ALS has encouraged us to deepen our relationship with Christ, to reach out and support others who are walking the walk, to learn from them and in some cases to teach them what we have learned.
We know that all people and families go through challenges, face diseases and heartbreak. ALS is not unique in this way, but it is a disease that has no treatment, no cure, and no hope for recovery. Just a slow melting away of strength, breath, and life. It's hard for some to face a disease with no hope of getting better. I want you to know that how you live with ALS is a choice. Choose joy over sadness, love more, laugh a lot and smile when you feel like crying. Embrace your tribe and know that when you are "weak in body" you can be "strong in faith."
Our family wishes to see the day when no other family has to go through this experience of battling ALS. We are committed to helping raise awareness and funding ALS research and we have chosen the ALS Therapy Development Institute as our research partner of choice. Last May we were able to raise over $62, 000 in a letter and social media campaign. We will support ALS Awareness Month again this year and hope to increase our research fund by $10,000. In the end, WE WILL WIN, because we will not allow ALS to break our spirit.
We also have a new way to give back to the ALS Research Community. We have launched a T-shirt website called "Team Hilliard Threads for ALS" where we are offering a few T-shirt designs that People living with ALS can customize for their Team or fundraising event and we will donate every dollar through the month of May back to ALS TDI.