"Huntington's Disease is really crap”
it’s a degenerative brain disease. The best way to describe it is that it's kind of like dementia, parkinson’s and motor-neurone disease all put together. There is no cure and it is terminal.
Lucy first learned about Huntington's disease when her father was diagnosed with it. They had noticed a few symptoms and knew that something wasn’t right with him, but nothing prepared them for the extent of the diagnosis. Lucy was in Gore to watch her sister perform in the local theater production when her Mum broke the news of the diagnosis to her and her sisters. She remembers Googling about the disease late into the night as they all grappled to learn as much as they could about the disease and about the fate of their father. The biggest bombshell was that her poor Mum had to let each of her 4 daughters know that Huntington's is in fact a genetic hereditary disease and they all have a 50/50 chance of having the gene and thus suffer the same fate as their father. This moment was the beginning of a life-changing journey for Lucy, but due to the nature of the weekend and that lots of extended family were around to attend the theater production, Lucy and her sisters needed to keep the news between themselves until it was public knowledge. As you can imagine it was a very difficult thing to ‘put on a brave face’ and pretend that everything was fine. At the end of the weekend when Lucy was driving back home with two of her sisters they were only moments out of town when the wave of grief and emotion washed over them and the tears were able to flow uninhibited.
As they drove, the song “Your love never fails" by Newsboys came on which was so pertinent for that time, especially the line that says
'when the oceans rage, do not be afraid,'
Lucy found comfort in those words and she was encouraged to trust that
'somehow God has it’.
Later that night Lucy got a phone call from her sister who had been to church and someone had spoken to her (not knowing the circumstances) about not being controlled by fear. An encouraging word at the right time for Lucy and her sisters reassuring them that God was indeed in the midst of their circumstances.
Obviously a very difficult time for Lucy but she can’t look back at it as all bad because a week after learning of her father’s diagnosis she was asked out on a date by her now husband, Tim. Talk about roller coaster of emotions! But looking back Lucy is grateful that both these journey’s started at the same time and that Tim has been there from the beginning, knowing everything. Lucy and Tim got married in 2015 not knowing if she had the Huntington’s gene.
Lucy had a massive decision to make whether or not she would get tested to see if she had the Huntington gene. At first she decided that she would get tested as soon as she could - she definitely wanted to know! However there was a wait before they would be able to test Lucy because her Dad was still completing all the tests for his official diagnosis. As the months went by Lucy changed her mind several times back and forth. If it was negative then she definitely wanted to know so she wouldn’t have to worry and stress, BUT if it was positive then there would be no going back from that. It was a stressful time as she weighed up all the pro’s and con’s, she knew she would need to definitely find out before having children herself, so after getting to a point of paranoia, Lucy decided she just needed to get tested and know for sure so she could get on with her life whatever the results.
in 2016 Lucy was tested and the results came back positive.
Lucy has Huntington’s Disease.
Her results were the same as her Dad’s which theoretically means the symptoms won’t begin for her until she’s in her early sixties as well. A very small silver lining for a hard diagnosis as most people get the symptoms in their thirties or forties.
Lucy’s appointment to get her results came a lot earlier than she expected and was scheduled for the same day she was due to get on a plane to go to Sydney with her Mum and sisters for a few days. She and her husband Tim took a couple of days off work before the appointment so they could spend some time together in their last few moments of ‘ignorance is bliss.’ When Lucy heard the news from the Doctor she wasn’t surprised, she felt like she had known from the beginning that she had it because she had always had a tendency to trip over things and be a bit clumsy.
"I wasn’t surprised but it was hard to hear."
Tim and Lucy walked back to the car in silence. That sacred silence after hearing bad news. They headed home to make the phone calls to family who were anxiously awaiting the news. It was somewhat reassuring to know that she would be seeing her Mum and sisters later that day but she says getting on the plane and leaving her husband after the news was the hardest thing she’s ever done.
It was so difficult doing the tourist thing in Sydney and Lucy just couldn’t ‘be in the moment’ and enjoy it. She hadn’t had any time by herself since hearing the life-changing news and she was exhausted, so she went back to the hotel and had a good cry and let it all out. She rang Tim wanting to come home. When her Mum and sisters arrived back Lucy came out into the lounge, sat on the floor and told them that she wanted to go home. Everyone stopped what they were doing and joined her on the floor, surrounding her with their love, support and shared grief. They cried together and they prayed together and Lucy will always remember what a special moment that was. Strengthened by that vulnerable time and supported by her family Lucy decided not to go home and to continue with their holiday plans.
It’s now a year on from getting those life-changing test results.
Lucy now watches her Dad and his symptoms a lot differently, she explains that part of the disease changes the way your brain thinks and changes aspects of your personality (e.g. become more aggressive or more passive etc) and Lucy has noticed that her Dad doesn’t necessarily see the disease in himself. He notices his jerky movements but he isn’t aware of the changes in his mind or lack of abilities. He is still very independent but it is getting harder to watch him do everyday things or to have a conversation with him at times as he struggles to find the right words and get them out, however Lucy is unsure as to whether he notices it himself or not. Lucy’s empathy has definitely grown for her Dad, but she struggles to be around him sometimes because she can’t escape the whisper in the back of her mind “I’m going to be like that,” and "that’s going to be me”.
It’s been a year of ups and downs but Lucy has held on to something her husband told her when she was in one of her low times,
“This disease is going to rob you of your life later, so don’t let it rob you of your life now.”
It’s this statement that has shaped her philosophy on living with this disease and making sure she turns her 'bucket-list' into a ’to-do’ list. Lucy and Tim were able to enjoy a couple of months in Europe this year and the planning and undertaking of that trip provided a fantastic and much needed positive focus for them over this last year. It will be awhile before they can save enough money for their next trip though - they have the philosophy, they have the bucket list, they just need the budget!!
Lucy describes having days of feeling peace and days of feeling angry or sad. She finds it particularly difficult in support groups or specialized Facebook pages to read stories and see pictures of people with Huntington’s disease that are meant to be inspiring, but instead of inspiration she gets upset because all she sees is a snapshot of how she will look and what she will become one day. It has been strange and a struggle for Lucy to find out that she has this disease but not able to do anything about it immediately because it’s not going to ‘happen to her’ until later on in life. Unlike cancer for example, when you find out you have that and the plan for treatment starts immediately. So Lucy has followed the research about healthy eating, getting plenty of omega 3, and regular exercise that theoretically helps to delay symptoms, she acknowledges it’s mostly anecdotal because no one will ever really know for sure, but she will continue to do what is within her control to do now, in the hope that it might help somehow for her future. Lucy tries hard to just take each day as it comes and at the end of each day she and Tim tell each other what they are thankful for in that day. She explains that even though it doesn’t change the situation, it gives you much needed perspective and helps you to move forward with your life.
As a woman of faith, Lucy has had to sit in the tension and contrast of believing in a God of miracles and healing, while also facing the facts of the genetic disease that she has. In the beginning she struggled to go to church and sing songs of hope, healing and trusting God, and she admits to still wrestling with it at times, but one thing she declares,
"I know that God is a God of healing, I just don’t know when, and if it is not in this lifetime then it will be the next.”
Lucy continues to recall how powerful the words are, of that newsboys song we mentioned earlier,
“Your love never fails”
It will be God's love that gets her through all the ups and downs of her life with Huntington’s disease. There are many many challenges ahead, and big decisions for her and Tim about having their own family. But whatever comes, one thing is for sure, Lucy will not be putting her life on hold or pressing pause, she reminds us all that no-one knows what tomorrow will bring so do the things that you have always wanted to do, don’t put them off!
Lucy’s advice for people who know someone or are supporting someone with Huntington’s or similar is to keep your sense of humor, one of Lucy’s friends told her she would wipe her a#*! for her when she got to the point where she couldn’t do it for herself!
Also to gently help them to keep perspective for now rather than worry about the future, as Tim has done so beautifully for Lucy since the beginning. Lucy also warns to be careful about the words you use when you are praying for someone, for example, Lucy finds it difficult when people pray for her in this ‘hard season’ because it is not a season - this disease is her whole life!
Above all Lucy recommends to just be there, keep showing up and be their friend, even though there is nothing that can be done and it gets hard, just be there for them in the midst of it all.
To listen to the full interview check out the podcast above.
To read more about Lucy's journey with Huntington's Disease check out her own blog at http://huntingtonshobbitshealingandhope.weebly.com/blogs