There is no doubt that we all need hope to face the future. As we enter a new year, how can we live with hope for a better 2017, especially when we’ve been knocked down and need the strength to get back up again.
I want to share with you how I live with real hope while fighting this terminal illness called MND/ALS. It’s a question I am asked often. It’s how I explain the dynamic of my body getting weaker, but my spirit gaining strength.
One thing I know is hope is similar to love. We can sing about it and write about it, but to describe its essence is difficult at times. We cannot put it in a jar to measure it or look at it. The best we can do is reveal its impact on our external circumstances and expose its effect as it changes us on the inside.
Last year, I was able to speak 31 times, officiate two funerals, and raise thousands of dollars for critical research funds and to support those who suffer. I couldn’t do that without hope.
We can put our hope in so many areas: medicine, science, knowledge, people, time and the supernatural. Let me warn you sometimes our hope can be misplaced as well, like when we hope in things or people that are not tested or not trustworthy. For example, if you are living in an abusive relationship, hoping that one day the person will change and yet time and time again they come back abusive and violent, then your hope is misplaced and even dangerous. False hope can be fatal hope.
Hoping a bank will give you money to buy a home when you have zero deposit and no work is false hope. But getting up and going to yet another job interview is a hope that can be the first step towards having that home.
Hope does not discount reality, but faces it with courage to bring about change. I believe hope is powerful and necessary to live a full life to the best of our ability and even more than our ability. Hope picks us up and carries us through the most difficult of days.
Hope never surrenders to circumstances, but rises above them. This can be very painful because, at times, it pushes us to our limits and into some uncomfortable places. Even if that means leaning into the pain of what is and finding a way through. Hope, more often that not, does not carry us away from our pain, but through it.
Hope is having a positive expectation for a better future while at the same time having a real contentment with today. Hope forgets what was, acknowledges what is, all the while embracing what is next. It’s believing that things will get better, and a peace while you wait.
This is a big one because having contentment may look like surrender, but it’s far from giving up. It is a result of hope that is both present and future focused.
I would suggest if your hope does not produce a true sense of peace and comfort, then it is probably misplaced.
Hope also demands a response. At times, it is an internal response that produces a quietness of spirit as we meditate on hope’s presence in our lives. For example, when my hope is of a spiritual nature, my response is trust. It’s knowing that God has me, He has got this.
At other times, it’s an external response that brings about an action that moves us forward.
Therefore, when my hope is in science, then the demand is that I do something. I take the medicine and actively look for whatever may help. For me, it means taking approximately 40 supplements a day, importing drugs from France, subjecting my body to scientist’s research.
I also have hope in assistive technology that can help me live with as much independence as possible. I know these things may not cure me, but I’m hoping they help and slow down what can be a very fast moving disease.
When I was diagnosed with Motor Neurone Disease, I was told there was no cure, but hope says there is a cure, we just haven’t discovered it yet. Hope says, I will search the world and find something that may help. It’s an attitude of never giving up because who knows what opportunity may present itself tomorrow. It means doing all you can.
Did you know that Japan has already released a fully tested advanced drug to slow down the progression of MND/ALS. It’s too expensive for most of us, but it is available.
My point is, hope keeps on looking, knocking and seeking.
Hope says, I will raise awareness and funds to help scientists discover new ways. This may mean that our hope is not just about ourselves, but about those who will come after us.
Our hope is wrapped up in a sense of legacy, making the world a better place for those who one day face what we face.
What if the world was a place, where, when someone is told they have MND/ALS, the very next thing they’re told is that we have a cure for you.
Hope is a sacrifice at times. It can look like people laying down their own agendas, comfort and freedoms for the benefit of others. Soldiers do it all the time. Or, think of all those who have died of cancer. In a very real way, their death has driven us to find a treatment and today, other people live because they died.
Hope never gives up. I have learned that focusing my hope in different areas does not mean a weakening of hope. I want to be spiritually, physically, emotionally and mindfully strong in this battle. Hope, therefore, can be multi-focused without becoming diluted.
It’s like looking through a kaleidoscope, it is made up of individual colours coming together and producing a beautiful pattern with balance and poise.
I guess it’s similar to loving your first child and then when the second comes, you wonder how you can love two as much as you have loved the one. You soon find that love is not divided up, it multiplies. It’s the same with hope. Hope is not divided up, it multiplies.
I mentioned that hope can have a supernatural focus. If you have every prayed, you have hoped in the supernatural. For me, that’s a hope that transcends this world and its limitations. I pray daily for the help of Jesus, literally, as simple as three words: “Jesus, help me.”
I choose Jesus to be the focus for my hope. He is, if you like, the anchor of my hope. When all other hope falls short or disappoints due to its limitations, I have a hope in Jesus to rise above all other hope.
Our world is fallible and imperfect. Drugs don’t always work, people don’t always turn up, weakness is real. But, my hope in Jesus is grounded on the belief that the same power that raised Him from death, is available to me. That God, by His grace can move at anytime and heal us of our sickness. Hope that means death has lost its power over me, my hope rests is heaven and eternity.
I will tell anyone who will listen about the hope Jesus brings, whether it be my psychologist, my neighbours and friends. I explain that the more I have relationship with Jesus, the more hope I have in my heart. That my hope ultimately is that I would become more like Him and even one day be with Him.
Yes, put your hope in medicine and people but also find a hope that transcends all of these. It’s a personal hope, it’s an intimate hope, it’s a hope that has real substance produced by faith, it’s a hope that prays “Jesus, help me.” Why not give it a try?
January 6, 2017 at 8:04 am
Dear Phil, you probably won’t remember, but around early March, my younger sister (64) was diagnose with MMD, and hers started in the throat. She is home in the U.K.
Dr Kelso gave me your name, and I did write to you, you gave some wonderful advice!! I did go home ( we have been in Australia for over 40 years, but the family still in UK) it was wonderful to see her, it was the first time in years that we were all together ( I have a younger brother then Sandra, me, and an older sister!! It was great that we all were together!! I stayed for 6 weeks , it was so very sad when I left!!!! She can’t talk anymore, and now weighs 45 k, we message most days, she is still resisting the Peg !!! But this week, she is actually saying that they want her to have the peg, so hoping she will!! I’m going to copy and post your words and send it to Sandra ( hope that,that’s ok). Thank you for listening kind regards Frances (Fiveash)
January 11, 2017 at 11:31 am
It is wonderful that you could spend such quality time with your sister. From what I have seen most people start to put on more weight and have more energy after they get the PEG. Hope all goes well.
January 6, 2017 at 9:48 am
Awesome words again Phil! Thank God for the wonderful hope we can all experience when we put our complete trust in Jesus. He rocks😊
January 11, 2017 at 11:32 am
Thanks Greg. So true. See you soon bro.
January 6, 2017 at 10:41 am
Phil thank you thank you on so many levels ,but knowing there is medication out there, but it is to expensive for you makes me a little 😠 ,hope is what I need to hear ,I feel like you shook me up to move in a new direction ,last year I watched hacksaw ridge ,I think that’s what it was called ,the soldier reminded me of you ,the situation he was in and what he believed god had asked of him ,he kept on fighting to save people and to shared compassion kindness ,you are a true soldier
January 11, 2017 at 11:34 am
Thank you so much for your kind words. I actually went and saw the movie twice. What an inspiration he was, such courage. HMMM courage might be my next blog. 🙂
January 6, 2017 at 11:34 am
Phil, thank you for your letters, they are such an inspiration. Praise the Lord for people like you who are such soldiers in the Lord. May He bless you this year and reward your hope. Pat
January 11, 2017 at 11:35 am
Thank you so much for writing. Blessings to you this year as well.
January 6, 2017 at 2:28 pm
Hope is everything! Hope is multiplied, not divided. So true and so wise. If you can’t wake up with hope in your heart then dreams will never be realized.
Thank you Phil for your Friday wisdom.
January 11, 2017 at 11:37 am
Hi Carolyn. Thanks so much for reading my blogs. Yes so true hope in our hearts.
January 9, 2017 at 4:22 pm
Phil it is clear that God is keeping you alive for very good reason. I can see in your posts how your perspective on life is deepening in ways that might not ever have happened pre your illness. It is extremely courageous and very inspiring for you to be sharing that deepening on life and its true meaning with us all through your blog posts. Please tell me you are putting them in a book. I think that every time you speak publicly, people would love the opportunity to purchase your blog collection. You have spread more hope, inspiration and words of truth than you could ever imagine. Please tell me how much the drug the Japanese have put out costs? Someone might be willing to fund it for you. I would like to know. Happy New Year!
January 11, 2017 at 12:17 pm
Hi Jayne. Thank you so much for your kind words. They encourage me immensely. As for the Japanese drug “Radicut (edaravone)”. it would be the cost of trip to Japan airfare and accomodation for 56 days plus drugs and medical services. Im looking at another alternative where my GP can write a script and administer here. At the moment they can’t get their head around it. Cost of drug alone is approx. 5k AUD per month (x2months). Have the best year ahead Jayne.
January 11, 2017 at 5:05 am
Amen, my friend. This is a great post for the new year – we all need more hope.
I had a tough start to the new year, spent the first week in the hospital fighting a bronchial infection. ALS has taken a toll on my lungs, brother.
Wishing you and your beautiful family a very Happy New Year.
January 11, 2017 at 11:59 am
Hi Bill. Thanks for your encouragement. Mate I’m so sorry to hear about your hospital visit. It must be very tuff when your lungs are compromised. The very best to you and your lovely family as well. God strength be yours my friend by the Holy Spirit.